Wednesday, September 19, 2018

What's Wrong and I Got This

Thought I'd put this all in one place to help me put my own situation in perspective. There's just so much.

• I tore my inner thigh muscle. No medical conformation on that, but that's what it feels like. I'm hobbled. I can barely walk. But I can get up and get moving forward with the help of a cane. It's been cut short enough for me to use. I make the cut end non-slip with Shoe Goo. Oh Shoe Go, what don't you do!

• I cannot carry and operate the cane. I need 2 hands on it and even then I'm shaking from the effort of stabilizing myself. I figured out that I can put food in Tupper with lids and then put those containers in a bag draped over my wrist so I can keep 2 hands on the cane. I don't need to plate meals. I can pretend that everything is take-out.

• When not moving forward I'm strong enough to stand. So I can do tasks at counter height including cooking and washing dishes. Heaven forbid I drop anything... I cannot reach the floor. Well, I can but it's hell so I avoid that. The deep bend is probably causing more damage.

• I have bad lymphedema. Both feet are horribly swollen. Visually it's embarrassing - as if there is anything I can do about it. Kankles! I have Kankles! I have water pills to help with the swelling (a result of the radiation) but with my torn inner thigh and being hobbled... getting back and forth to the bathroom is so hard. Do I suck it up, Buttercup? or back off the pill and deal with water retention.

• Water retention... I'm on a steroid to help with Percocet consumption, radiation pain, internal swelling, keeping things moving... steroids cause swelling too. I have a face like an orangutan. Vanity. This too will pass. So will the crazy weight gain due to the steroid and water retention. Vanity.

• I was doing so well with the recovery after radiation (to the left knee and both shoulders). The pain was incredible. It took my breath away. At times it made me bawl right out loud because I couldn't stand it any more. I had meds for that. I had gotten over the pain hump and was a couple weeks into the fatigue stage. If the worst thing in life is that you need is a nap, life isn't that bad. I probably had fatigue before, but I was too busy powering through the pain. I intentionally got up on a regular basis to do small tasks. Keep the body moving so it heals in motion - stronger - faster - bionic.

• I'm on a new chemo. This one is also a light weight maintenance medicine. It's 3 weeks on (IV on Mondays), one week off. As of Monday I'm on round 2 / injection 2. 4 more rounds and we'll have a look-see to make sure all is stable. Bone only cancer, Baby. That's a good thing. It can go on for years and years and years. Maybe they'll even find a cure in the mean time. You never know.

• I lost half my hair with this one. I have a full head of hair, but those hairs are spaced way out sooo... 75% bald. I have wigs for that. Vanity.

• I'm on blood thinners. We found a clot at the back of my right knee a while back and I was immediately put on injections. I did my 4 rounds of 30 shots to the tummy and then spent a couple weeks trying to figure out who my prescribing doctor was (so many doctors) so I could get put on oral thinners. Shit. Found out yesterday I have to be back on the needle. Had the man pick up my next set of pins (40?!!) and started them again last night. Apparently blood clots are a very serious thing for cancer / chemo patients. So not only am I puffy and swollen, I'm also black and blue. I bruise easy now.

- - - - - - - - - -

I keep powering through. I keep looking for the silver lining. I have a great sense of humour about all this shit. I just need to keep it in perspective. It's real. It's a great big shit-pile of reality. I can pretend it's not all that bad and do silly things like crafting, tending my indoor plants, being a web designer...

Look good, feel good! It's important to play dress up. It's important to put on make up. Sometimes I let that slide because it's a lot of effort. But I feel much better when I do make the effort. Today, hobbled or not, I'm making the effort.

I had to give up on being an art teacher this October. I just couldn't guarantee I could be there. I can't walk. I can't drive. It's not fair to them. Maybe I'll keep putting a lesson plan together anyway. Maybe next year I'll get all my shit together. There's a gent at the pub who's a teacher. He's invited me to teach locally to the kids (there are many schools in this neighbourhood). I could start small... (snickers). Teaching kids is no smaller than adults; they're just shorter... and stickier.

I'm not going to feel bad about this bucket list item either: I wanted to try stand up comedy this year. I can still work on a script... But no deadlines. A goal without a deadline is just a wish. I want it to be more than that sooooo... yeah, I'll defer that to next year. Besides, I have years and years ahead of me (knock wood).

Tuesday, September 18, 2018

Just a Sad, Lonesome, Pained Bark

I feel like...

A middle aged sea lion covered in battle scars, recently bit, stranded on a rock in the middle of a grey choppy sea, slowly bleeding out, just out of reach being circled by slow moving orca who occasionally test my proximity whilst I sing my whale song.  Only I'm not a whale so there's no harmony to it; just a sad, lonesome, pained bark from a middle aged sea lion.

No worries - there are no orca (or wolves for that matter) nipping at me.

Hey, you know what another name for orca is (besides killer whale, which is untrue; they are a member of the dolphin family, not whales)?
Sea wolves.  Just sayin'.

And I'm not alone based on all the encouragement from friends, family, medical staff and the over abundance of the kindness of strangers that got me through the day.

I knew today was going to be hard - so hard.  I knew it was going to be painful - I was prepared.  I knew today was going to be long.  It was magical bubblegum flavoured unicorn juice day.

I'd fallen about 36 hours previously and hurt myself BAD.  My outer hip is bruised up, my inner thigh muscles from groin to knee are torn up and my mid to lower back is twisted up.  When I sit or stand and am motionless there is zero pain.  However being motionless causes everything to lock up, which is OK when I have nowhere to go, but that's rarely the case.  The first few steps are always excruciating (8-9/10 pain) as I break through that stiffness.  It doesn't get much better.

So I taxi it to the hospital because I wasn't keen on being dropped off at 6am by the man who had to go to work and waiting the 3 hours before my blood appointment.

From curb to hospital is about 20 ft.  4 steps, rest, pant... I can do this.  4 steps, rest, pant... are you kidding?  Did the doors just get farther away?  4 steps, rest, pant... you are not allowed to cry!  Stop resting!  It only makes starting harder.  I was rescued by Steve, a switch board operator, who dashed in, found me a wheel chair and took me to blood.  The kindness of strangers!

I'm not accustomed to getting help.  This felt good and weird.  It also felt weird when the blood nurse rolled me into the tapping room and out again.  That was easy.  I love when experienced nurses go after my well protected veins.  Now that I was done with blood I had to get down to the first floor, check in and back up to this same second floor to let them know I was checked in so when the blood results were in I could do triage... including mentioning my fall.  BUT... here I was trapped in this ridiculous wheel chair - a chair with wheels but requires a 2nd person to push you around.

If I put my mind to it I can do it.  I can walk to the other side of the hospital and fetch a proper chair since I was alone and would have to be able to get myself about all day.  But first a visit to the loo which is on the way because I wasn't dealing with any last minute accidents when my brain finally kicks in and says, "umm, you need to pee NOW."  Thanks for the heads up brain.

From the blood unit to the loo is straight down the hall, with frequent stretches of wall mounted railing for the 3 point contact that makes walking easier, the distance is about 100 ft.  This took me over 20 minutes to struggle towards.  Good call on the stop at the stop and pee notion!

In that period of time at least 3 ladies were so horrified by the pained expression on my face that they had organized a "lets get her a chair NOW" party.  There was a functional mobility one left outside the door for me when I was done.  WOO-HOO!  Just call me speedy!  Thank you, kindness of strangers!

Being in a chair is weird.  People give you a lot of room and try to accommodate you a lot more because "handicapped".  Even the Second Cup lady was like, "can I add the cream n' sugar for you?"  What?!  Good service from this kiosk?!  Well, OK then!  Also, being able to sit through my day, the pain was wiped from my face and replaced with good humour.  My face really is a clear slate on which my thoughts and feelings are projected.  I managed to joke with a few people about my first day with the new wheels and I could tell that made their day easier too because no one is hanging out in the cancer ward just for kicks.

Being in a chair is fun... at first.  By the end of the day it was just tiring.  Nothing compared to the exhaustion I would have experienced had I not had the chair, but just the same.  At least I was getting good at steering, rotating, backing up... ok, not so good at the back up.  It's not quite mirror opposite but somewhere in between.

So I reported the fall in triage, who reported to my oncologist, who wanted me down there for an assessment, who requisitioned an x-ray, who then sent me back down for chemo.

I had to stand for triage.  "Are you sure we can't go on last weeks reads?  Nothing's changed really," I begged.  "Please. The pharmacist will want to know for sure."  Up on the scale I go and it's bang on the same read.  I sat back down - whew.

I had to stand for assessment.  Standing up is tough, standing still is easy.  My Dr. figured not broken, but just in case, lets have a look.  I sat back down - whew.

I had to stand for x-rays.  And climb onto one of their horrible beds.  And twist just so.  That took about 20 minutes and then I had to climb back off.  Why the hell don't these beds come with hand grips or rails or some sort of pulley system where you can leverage yourself up and down?  I sat back down - whew.

I had to stand in chemo.  And climb into one of their designated drip chairs, which are surprisingly comfortable.  The nurse was great too.  She knew how to tap my sneaky veins and we joked for a bit about how the Benadryl would knock me out (expect snoring) which she appreciated since most people who come through chemo aren't there for kicks.

My drip comes in 4 separate bags: steroid, meds, Benadryl, saline flush.  The Benadryl gets me every time - out cold!  I keep trying to fight the zzzzzees but it's an impossible battle.  The flush helps a bit to wake me back up, but really, I could just sleep forever.  It's times like this I wish the man were here just to whisk me home and put me to bed.  But he has to work.  And there's things I gotta do too.  Like get drugs and call a taxi.

Stopped at the pharmacy to drop of script and had about 45 minute wait, so I booked over to the gift shop (Weeeeeee!   Wheels!) per usual to kill time.  Most of the shops racks are arranged with lots of room to get a chair around in.  Most of the shoppers are extremely courteous of people in chairs.

I almost bought a $5.99 coil bound watercolour block with hot press paper.  Yeah, because that's what I need - more hoarded art supplies and something more to lug around today.  I suspect this book will be there for my next visit when I have more mobility.  People don't recognize gold when they see it.

There are some lovely coffee cups in the shop now too with Van Gogh paintings on them.  I think I'll spoil myself with one before Christmas.  Now which do I love the most?  Every Van Gogh is so different and yet so him.  Irises?   Sunflowers?  Starry night?  His work, while looking nothing like my own, may be why I can paint impressionism so well.  It's about just putting down the paint and accepting that the brush and medium are telling a story.  You can't force it.

I had to laugh this one time: I did a nature mural for a sister-in-law that included a heron flying across her lake.  From a distance she was in awe at it's perfectionism.  She climbed up on the scaffolding with her fancy camera, zoomed in and was shocked.  "There are only 3 brush strokes!  What a rip off!  How can you paint something so perfect with only 3 brush strokes!"  Me rubbing knuckles on chest.  "Yup."

So I got my drugs.  Now to wheel all the way to the other side of the hospital... (again) to hail a cab - or call for.  The guys dropping off are not allowed to pick up.  Every cab at the hospital must be a requisition coming and going.  There's no piracy here.  It's a privilege for them to be allowed to transport the unwell.

"*Please send a taxi to the ambulatory, cancer side of the hospital.  And this is important - send a car, NOT a van.  No vans.  I can't get in and out of vans.*"

The chap went to the main entrance, circled a few times and left because I was nowhere to be found.  I got a text messages saying why my ride was not showing up.  Finally - a good excuse for these silly auto text messages I get every time I dial them up!  I called back immediately and reminded them that I had requested the ambulatory doors on the opposite side of the building.

A van pulled up.  Grr.  Oh well, I NEEDED to be home.  FAST.  So much pain.

I did get to sit in the front seat so I didn't have to crawl through the back to reach a seat.  Alas, the seats are just above hip height on me which means a hop up.  I'm not much of a hopper these days.  Also, I'm entering the van with my torn up leg side first which I have to manually leverage in, never mind manually leveraging leg number 2 in which took me a few tries to get tucked in so I could close the door.  And it's a bucket seat.  Yeah, new, padded, conforming comfort... that I'm stuck in.  I can't slide into a comfortable position or slide out for that matter.  I was hoping I could just turn and drop out of the van when I got home but no.  Even that required a lot of manual lifting, prying, more tearing... When the customer says NO VANS they mean it!  Van taxis suck ass!  Besides, 99% of the time, who needs all that space?!  Who the hell is booking around with 5 other friends all the time that you need a van?

OK - now the worst part of my day.  That epic journey from the front of my building to the apartment.

My stride with cane is about 3" and very shaky.  Pulling my left leg forward is so very painful!  10/10 pain that I'm scowling through but I'm not going to cry.  The cab driver helped me through the first set of doors.

The next set of doors is locked, which I got open, but I can't get through because it's heavy and leaning on me and my shoulder bag weighs a ton!  A tenant comes to my rescue and holds the elevator for me.  It takes 10 minutes to get from the front door to inside the elevator where I have to stop, turn, rest, wait... I'm alone.  I can swear and cry because I know how much it's going to hurt when I have to start again.

It takes too long for me to inch through the open doors and they elevator doors smack me twice as I try to escape.

From the elevator to my apartment door is 10 feet...  With 2" shuffling strides that's another 10 painful minutes.  I can hear myself crying out with every step, weird whale songs, curse words and sobs.

My own apartment door weighs a ton and automatically closes.  It too leans on me heavily and I can't get through it with my shoulder bag, cane and one mis-step where I've put too much weight on my bad leg and am having trouble pulling  my right leg forward to catch up.  I have to throw everything down and just deal with my body.  The shoulder bag is down - I'll need to push it ahead of myself because there are drugs inside that I need.  The keys I throw to the floor strategically under the key rack.  Easy enough to find again when I need them next.  My get my flip-flops off and my swollen feet thank me.

Fuck my fucking life I dropped the cane too.  I missed the door knob and it now lays on the floor.  I can't get to the couch without it.  Mind over matter, I manage the deep bend to fetch it.

There's another 8 ft between me and the couch - 5 minutes of shuffling and screaming cuss-words with that goal in mind.  Another 10 minutes to get my ass on it, to turn, to pull my legs up and lay down.  The cane also comes in handy as a crook to hook around my feet so I can pull my legs up.  I couldn't have moved them on my own.  I was near paralyzed with pain.

There's that weird whale song again as I scream hard and loud into a pillow so as not to traumatize my neighbours any more than I have to.  I know they can hear me in the hall.  I hear them.  It's the dinner hour and they have kids and spouses they have to comfort because their neighbour is in so much pain.

It wasn't long before I passed out.

And here I am.  I woke at midnight, long before the brain said, "you have to pee NOW" so I tested the legs.  No pain at all while still.  I had to be very, very careful with the strides... only 6-7/10 pain moving forward; some times only a 3/10.  And back to the couch to document all this before it escapes my mind.

Pain is a weird thing.  In the moment it's 100% real and debilitating.  A few days from now the memory of it will begin to fade.  A few months form now it will be a fairytale about how bad things used to be.  I only remember how bad it was because of these posts; to go back and read them, it's almost heart breaking that someone experienced that.  But it was real.  Plus, every pain is different.

At the townhouse I was made of glass and splintering wood.  I was shattered and it took my breath away.  2 years ago I was trapped in a rusted iron maiden while impaled by knives and crowbars.  This time I'm simply torn and seized up - not so simple.  There's no telling which sensation was worse.  All I know is that I'm taking a lot more medication to control it these days (including natural ones), desperately seeking some "Quality of Life" - the go-to catchphrase for most medical professionals... and now me.

What I really need now is time to rest and heal.  Time to relax.  Stop putting pressure on myself to get on with life.  This is it.  This is life.  And it is getting better, just so long as I don't rush it along.  Not that I was trying too.  I fell.  It was an accident.  I simply didn't have a leg to stand on and that's no one's fault.

- - - - -

Bonus (because I really don't like confrontation), I didn't have to step up and bail on the teaching job myself - the nice lady who put me in touch with the opportunity handled that for me.  I should man-up (I know, right?  so not PC) and do the right thing by also reaching out and apologizing for not being able to live up to my responsibility.

I know - I'm not responsible for being hurt/ill.  Sucks when you realize you haven't a leg to stand on.  This usually happens when you're already half way down! It's totally a Canadian thing to be apologetic for that which you cannot control.  Whatever makes you and them happy.

Sunday, February 26, 2017

Pain Today Gone Tomorrow

After a month of agony, today is day two of NO PAIN!  or very little.  I'm still stiff with low energy.

Took a bath tonight; a nice long, hot, relaxing soak.  Whatever energy I had was sucked down the drain with the bath water.  I had to have a 20 min lay down.  I wasn't strong enough to feed myself - Paul made me dinner.  So now I'm fed, medicated, bathed, shaved, moisturized and resting.  If only I could sit up, life would be good.  I'm kidding (almost).  I'll be able to sit up in a few minutes.

While yesterday was my first day of feeling normal in forever, there was still a brand new phantom pain - in the muscle above my left breast pushing against my ribs, it feels like I got poked hard with a blunt stick (which didn't happen).  It got worse and worse through out the day until evening when the slightest wrong move felt like a punch/stab/jolt.  I wok this morning with the pain subsiding, feeling like a it was a healing bruise.

It's the perfect example of how my random, for no good reason pain works.  It just shows up, hurts for as long as it wants and then goes away.  It could be my hip, my ribs, my joints, my arm, my jaw... just pain - then not pain. And almost always on the left.  Knock wood the next radiation fixes a lot of that.

There we go... energy returning.  Sigh.

Thursday, February 23, 2017

Start Blogging Again

I stopped using this blog when I was all done the chemo and radiation the first time around, but it might be time to start utilizing it again.  A place to vent, a place to express, a place just to get the words out.

Words like pain, hurts, ache...

Yep, last year I think, time just keeps passing... No wait, 2015?  Was that when I was re-diagnosed?  I was working on a mural downtown Toronto when I bent, lifted, twisted and totally messed up my back.  It was late summer.  I had my 4 year all-clean check up coming up but kept postponing the appointment because my back hurt so much for so long.  I had spent weeks laying on the floor trying to rock my spine back into alignment to no avail.  Screw it... back pain or not, I wanted my all clean.

Well guess what.  Back pain is a serious symptom of stage 4 breast cancer.  Who knew?!

Turns out the little buggers came back and made themselves at home all along my spine, in my hips, and apparently in my jaw (although I don't notice any ache there).

We tried a different hormone... the hormone did no good.

Next step - total infertility and chemo for the rest of my life.  As long as they were radiating the masses that were causing so much pressure in my back, they zapped off my ovaries which put me instantly into menopause and qualified me for the oral chemo.

That stuff works.  But it's hard on your body.  I especially suffer from chemo poisoning of the feet - red, dry, cracked, peeling... walking on Legos made of lava.  Not fun.

Life expectancy.  Hell if I know.  Could be 3-4 years, could be 10-20.  I keep exaggerating the deadline because you never know, there could be improvements in medicine.  Could be that I'm just a tough old broad who refuses to die.

OK, so let's say it was Sept 15 that I was re-diagnosed... And it's Feb 17... That's 15 months I've been living like this.  Dammit!  I was supposed to be a success story!!!!  (Or maybe I am and just don't know it.)

I think I will start using this blog a lot more.  Several people have said I should write a book because of my positive outlook.  My thoughts on that?  Geesh, if every one who ever got cancer and wanted to share there experience in a book wrote one, man, that's a lot of downer reading.  Who am I to say what it's like and what to expect.  I've done my utmost best just to keep it on a need to know basis.

Like last fall when I'm doing a check up and my hospital sherpa mentions, "you have stage 4 cancer" and I was like, "WHAAAAAAT?!"  I just thought it was a recurring cancer.  Deny, deny, deny...
(PS: Stage 5 is you're dead, so that kind of through me for a loop.)

Thursday, November 20, 2014

So how's ur health now ?

Better I suppose. Had my first bone density treatment on Monday... that stuff knocks you on your ass. It's supposed to be flu like symptoms...I basically slept for 48 hours.

I have a head ache today. Too much beer and up too late last night. I'm thinking the too much is related to the medicine on Monday because it wasn't excessive.

Re-diagnosed... I've been celebrating being post breast cancer going on 4 years. Not no more. It's back. But it's moved to my back. Apparently breast cancer cells like bone tissue and the spine is a lovely warm place with lots of blood flow to make the little buggers feel safe an cozy.

The bitch of the mater is, now that it's back it's never going to be eradicated. It can be managed... but for how long is anyone's guess. I start radiation on the 24 to help shrink some of the masses, there by giving me better mobility and less daily ... it's not really pain. But it is an ever present discomfort.

I'm just peachy.

I know... It's a boat load to ingest. There just is no nice way to sneak the Cword into a conversation. So if I come across as prickly sometimes... well, it's because I am. And I have a right to be. The last time I went through this it was with the intention of never having to deal with it again. A year of chemo and d radiation and shots and what not... That was tough stuff and I sailed through it with a smile on my face like nothing was the matter. It was more important that everyone else feel ok because it wasn't the end of the world. This time it's a bit tougher. I could have a few years left or many. We just don't know. But I have a sneaking suspicion that I'm not going to ever know what it's like to be an 80 year old woman.

I'm still processing.

Friday, April 13, 2012

Hormone Replacement Therapy

This is a small tablet that I'm supposed to take every day for 5 years.

It sweeps away my "egg-laying" estrogen in favour of "stable testosterone".

At first it was all about the roles coaster ride of up-down/hot-cold... The hot flashes were..
OMG!!!! hot, hot, hot, hot, hot, hot, hot, hot, hot, hot, hot, hot! Seriously! I hope you never experience the sensation of having the sweat glands on you knee caps open wide and start sprinkling in an effort to cool you down! It is gross!

Waking every night, every 1.5 -2 hours like clock work to find yourself swimming in a pool of sweat... not good for you or your partner! Mind you, once I cooled down and found that I had my own space for a change... :-)) It's all good.

Hot flashes only lasted 8 months or so... I still get flushed now and then but it doesn't compare. "oh no, my neck is hot and sweaty."
"Freakin' Front Doors! It's flaming hot... I could throw up it's so sickly hot!"

That's past. But now the upside of hormone replacement therapy. ;-))

OMG I feel 24 again. And it's hard because I keep looking in the mirror and that is clearly NOT a 24 yr old hotty! My hormones are off the charts! I like it, I hate it. I like it, it's so very, very frustrating. I like it... I'm such a cougar! A very, very caged and dangerous big cat.

On the bright side, I when from looking 34 (pre chemo) to looking 48 (ravaged by chemo) to looking my age. I'm a fabulous 40 (ish).

I stand by this request: I deserve a mulligan! did 40 twice!

Post Post Post Recovery

Wow... I had no idea how long it has been since I last blogged here.
ONce cancer treatments were over it was like... done now. I don't need to keep bringing folk down. I'm sorry that I haven't shared how easy recovery was.

I stopped being treated. My hair started to come in. Thank GOD for eyelashes!!!!!! Man! That was brutal! You have no idea how important those little dust flick-away hairs are! Seriously!

After some time my mouth's chemistry stabilized and things started t taste normal. I still get an exciting blast of chill that radiates across my chest when I drink anything chilled. But that's kind of nice (rush)