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Thursday 30 July 2015

Did I Forget to Take My Meds?!?! Finally Awake Enough to Write a Post-Surgery Update! :p

07/30/15 - Wow, where has the time gone?  It’ll be two weeks tomorrow that I’ll have arrived home from hospital!  Been wanting to write in here but am so fatigued most of the time that I just never seem to get around to it.  Feeling unusually awake right now, so I’m grabbing the chance while it’s here before that pesky urge to nap creeps up on me yet again!  Please bare with me if I’m not as eloquent as I usually am!  I’m on  five different meds right now, down from six, as one ended yesterday!  Anyway, hopefully I don’t babble too much & this will actually make some sort of sense! :p

So, my surgery went well three weeks ago, despite taking twice as long as expected & being very difficult & complex due to my sarcoma being wrapped around a nerve. Remember my friend’s hypothesis that my discomfort was due to my sciatic nerve?  She wasn’t far off the mark, except this was obviously more than your average case of sciatica!  The way my oncologist described it was, they had to “peal it (the tumour) like a banana” in order to preserve the nerve, but luckily they were able to do that in one piece, so as to lesson the likelihood of the cancer spreading.

As I regained consciousness, I awoke to 30 stitches running from my buttock to the back of my knee, two drains (knee & backside), a lot of swelling (edema) in my leg (foot included), a sizeable chunk of my hamstring muscle missing, neuropathy in my left foot & some awesome painkillers, pain pump included!  Oh, and no more evil alien living inside my thigh!!!  :)

They actually warned me the neuropathy (nerve damage) may occur & may or may not go away with time, but so far there’s been no improvement, so I’m just learning to live with it.  So far, it’s more uncomfortable than it is painful, though once in a while, the irritation borderlines on pain.  The best way I can describe it is if part of your foot was half a asleep…yet the pins & needles feeling is most pronounced when something is putting pressure on my foot.  Even something as light at bed sheets is annoying!  God help me when winter coms & I have to wear socks!!!  But, like I said, you just get used to it.  Other than that, my leg is extremely swollen right now.  My oncologist says the edema will take roughly six months to dissipate, but my recovery & medical leave will be about three more months if all goes well.

As for the pain in my leg, it has its moments, but the meds have been working quite well to keep that “bubble” going, where I don’t have too much pain while not moving.  However, I do get sudden shots of pain while walking (especially long distances), and sitting for long periods of time is very uncomfortable.  I also have to sit on a pillow ALL the time, placed on a firm surface for stability & to minimize the irritation on my drain site & stitches.  The larger drain site on my backside has been the most significant source of pain so far.  More on that later!  Meanwhile, parts of my leg have significantly reduced sensation, whereas other parts of very sensitive!  I think of it as a mixed blessing, as there are many sensations right  now I have no desire to experience!  :p  Probably the oddest sensation I do have right now, though, is the feeling as if someone stuck a bunch of cotton candy in the back of my leg.  Not sure if that’s the edema, nerve damage or both, but the inside of my leg just feels like a giant sponge.  Currently, I’m barely able to bend my knee, nor can I bend over.  My remaining muscle is also very weak, so I always need to grab onto something to stand up, sit down or climb stairs. As for nerve pain, I do get occasional discomfort in my back, which I’ve noticed is increasing over the past few days since i’ve begun reducing the Tylenol 3’s with Codeine.  This could also be related to the fact I tense up when my drain site gets irritated.  Let’s just hope it’s not a sign of things to come!!!

To my shock & amazement, they actually had me up & walking the day after surgery with the aid of a walker!  I thought they were crazy, but apparently they do this to everybody!  It’s worth noting, it took two people to get me out of bed for several days after surgery, but eventually, I graduated to one person & then eventually was able to do it on my own with just the aid of an ingenious tool, courtesy of the hospital’s physio team - a foot loop that allowed me to support my leg& hoist it along while I dragged the rest of me out of bed with the aid of the bed-rails.  Getting in & out of bed actually hurt more than the walking did.  When I say walking, though, it’s more like waddling!  “Quack, quack” <incert duck sound here>!  :p  They started me off with a walker, which I still use now for longer distances, since I can barely bend me knee & am unable to bend over.  In other words, if I fall, I’m not getting back up, so hence the walker.  Being visually impaired on top of all that, adds even more reason to use the walker, especially while out of the house.  About five days after surgery, they also taught me how to use the crutches, which are less steady, but are necessary for stairs, since a walker won’t fit most standard-sized stairs, and if I’m leaving the house alone, I can’t exactly take the walker with me.  But if I’m getting a ride somewhere & we’re going somewhere that’s accessible (has a ramp or elevator), I’ll always choose the walker over the crutches.  It’s also much faster than the crutches!  Like about twice as fast!  But my house has a LOT of stairs, so the crutches were a must have.  I actually bought them outright but am just renting the walker. Hopefully, I’ll eventually graduate to just a walking stick (or in my case a support write cane for the visually impaired) or better yet not need any extra support at all.  But time will tell on that one.

Other tools that have come into my life post-surgery include: an extra long-armed reacher, a sock-aid, extra long shoe horn, bath transfer bench, commode, two shower grab bars, the addition of proper physical railings on one of my stairways that previously only had wall carvings that functioned as a railing, and as previously mentioned, that handy-dandy foot loop, walker, crutches & lots of lots of pillows!  Also bought a recliner, to help combat  the edema, rather than having to pile a mountain of pillows all the time on the bed or couch.  This way I can watch TV (if I manage to stay awake!) & battle the edema at the same time. :)

Now back to those darn drains.  The first one (near my knee) was small & a piece of cake to have removed.  The second one (on my backside), on the other hand, was the complete opposite!  It was nearly a foot long & to say its removal was painful was an understatement!  On a scale of 1-10 for pain it was a 20.  It was so bad, I actually sobbed like a baby when they finally took it out, which by the way, got delayed because my leg had so much drainage.  But finally, they took out out 17 days after surgery.  It was also on that day that I learned, I am officially cancer free!!!  The toxicology report came back negative & showed clear margins!!!  :)  So, it was a bitter sweet day!  But the pain of that drain was all worth it if it means all remnants of that evil alien are gone from my body!  :)

It was weird, though.  I felt like I should be celebrating, but as mentioned, I am so tired ALL the time, as is my poor mom who’s been temporarily living with me while I recover, there’s just no energy left.  And there’s also the knowledge that recurrence could happen & that I have a long three months ahead of me.  But I am grateful.  Earlier today, I learned that a long-time co-worker of mine who worked at the same place I did for many years passed away on that same day I learned I was cancer free.  She was only about 10-15 years older than me at most, and had chronic health issues of her own.  So, news of her passing hit me surprisingly hard.  I am just so thankful, though, that the universe has decided to give me more time.  

Next on the agenda is to hopefully have all my stitches removed next week, though part of my incision site has been slower to heel due to the chemo & radiation therapies, but it seems to finally be coming along, as I just graduated from having daily home care to having homecare every second day, so crossing fingers all goes according to plan.  They’re also going to give me a referral for physio next week, so hopefully that’ll help combat those silly sponges that seem to have taken up residence where the evil alien once lived in my leg!  The at-home stretches have helped a bit but still have a long way to go!

But on that note, my drain site is really pissed off at me now, so I’m getting out of this chair, which by the way, is a lawn chair with lots of pillows!  Another ingenious adaptation we’ve come up with in lieu of my killer computer chair, which would likely roll away on me while trying to get in or out of it! Wheels on walker = good, wheels on computer chair = very bad, LOL!!!  :p

*[NOTE - The title of this post is loosely inspired by Placebo's song "Meds" from their album of the same name, released in 2006.]

Tuesday 7 July 2015

Babble, Babble, Bitch, Bitch...Stupid Alien, Can't Wait Till You're Gone!!!

07/07/15 - Had my pre-surgery telephone consultation with a nurse this morning. She told me to bring copies of my personal directive & power of attorney docs to surgery on Friday. Wow, I know that's probably standard procedure with major cancer surgery like this, but that sure threw me for a loop! I've had major surgery several times & not once have I been asked to bring that kind of thing before. Mind you, it's been 10 years since my last major surgery, so perhaps that's something they do now with everyone...

And tomorrow I have to go across town to see the anesthesiologist, which I'm rather annoyed about, because I'd signed up for laughter yoga at Wellspring but I can't do both, so I have to cancel. I was really looking forward to it, too, as I've always wanted to try it since seeing it on the news a number of years ago. Oh well, hopefully, they'll have another session of it in the fall when I'll be well into my recovery.

*[NOTE: Post title inspired by lyrics from Marilyn Manson's song "This is the New Shit" off their 2003 album, "Golden Age of the Grotesque".]

Monday 6 July 2015

Pre-Surgery Consultation

07/06/15 - Quick update.  Please forgive my lack of finesse in writing today.  Got less than four hours sleep, as the anxiety of everything is starting to creep up on me, but here goes… Saw my oncologist today for my pre-surgery appointment.  Everything’s on track.  The bug bite from hell, though slowly healing (my foot’s still more swollen than usual), won’t have any impact on my surgery.  He’s also not worried about all those nodules that came up, because everyone has nodules throughout their body whether they have cancer or not, so they’ll watch them & if any get beyond a certain size, they’ll take further action.  Re: my concerns about the >25% round-cell component, he says that it does NOT change my current treatment plan, so he is not overly concerned about it at this point.

As for surgery itself, surprisingly, it’s only going to take two hours & he aims to remove my tumour (aka “the alien”) in one piece, which will reduce the chance of it spreading.  I’ll be in hospital for about a week, possibly even less - yes, LESS!  I juste hope they don’t try to push me out of there prematurely just to free up a bed.  They’ll also do toxicology reports at the time, which will take two weeks to come back, if memory serves right.

I will have some physio in hospital, but considering I’ll have stitches still healing, not sure how much that’ll entail, aside from wobbling & hobbling around very slowly!  Oh, and thank god, there’s no requirement for a skin graft, which is a relief. He’s expecting my recovery time to be about three months, so hopefully I’ll be done before my short-term disability runs out, cause otherwise I’ll be in for a substantial income drop if I have to go onto long-term disability.  So, that’s pretty much it.  I have a pre-surgery preparation appointment via phone tomorrow morning, as well, and on Thursday I have to call for my surgery time.  I, of course, forgot to ask my oncologist several other questions, despite writing numerous questions down!  But it doesn’t really help when you forget to write the question down in the first place!  :p  Damn it, I’m so tired right now, I forget the questions I forgot!  :p  Can’t even come up with a Placebo lyric to go along with this post!  :(  Zzzzzzz...

Thursday 2 July 2015

Thankful Thursday

07/02/15 - For ages, I’ve been wanting to do one of these Thankful Thursday lists but just never got around to it!  But with surgery being eight days away & an explanation of my recent scan results just four days away, it’s now or never, because next week’s going to be insane & I’ll probably be a basket case come next Thursday!  So, here goes…twelve things I’m thankful for. :)

1. My mom & auntie​ - for being my rocks & the best family I could ever ask for.
2. My little dorklets, aka my dogs - for all their unconditional love, cuddles & companionship over the years & for letting me take a million photos of them, unlike a certain other cutie pie who shall remain nameless!  ;) <3
3. My close friends, near & far - for embracing & I’m sure sometimes enduring all my little quirks & sticking around when the going got…is…tough, for making me laugh & keeping me sane…for giving me space to hermit when needed…but then dragging me out from under my rock from time to time.
4. Medical benefits - I may not have a job anymore but at least they let me keep the benefits for a bit longer!
5. Wellspring - for giving me a place to go...
6. Placebo - For being the mirror to my soul & one beautiful distraction!  C’mon, did you REALLY think I could do a list without mentioning them somewhere?!  :p
7. This amazing weather we’ve been blessed with this summer & this past spring & winter. I don’t know what I’d do if all of this had happened in the dead of a winter from hell!  I think they’d have to cart me off to an institution somewhere!
8. Off! bug spray!  Needs no explanation! :p
9. My house - If push comes to shove & I have trouble finding work once I’ve recovered from surgery, I can sell it if necessary.  Hopefully, it doesn’t come down to that, but it could prove to be a bit of a safety net.
10. Hope - I’ve read so many stories of others in the same boat who have none.  So grateful to at least have that luxury.
11. My smartphone!  It may be slower than a turtle these days, but it’ll be my lifeline over the coming weeks!
12. Internet - see above line re: cell phone!  :p

I am the Bones You Couldn't Break - June May Have Kicked My Ass But I Won't Let It Win!

07/02/15 - It seemed innocent enough - a Sunday evening BBQ with a few close family members.  Little did we know the danger that was lurking in our midst!  Being lulled into a false sense of security with the mosquitos not being too bad yet this year, I forgot yet again to put on bug spray.  You’d think I’d have learned my lesson the week before, when something other than a mosquito - possibly a wasp - took a microscopic chunk out of my right leg.  It was red & hurt like a bitch for about four or five days but other than that, it healed up relatively quickly.  So, little did I suspect what was coming next!

This time around, we think the culprit may have been a black fly, which is apparently known to take quite the chunk out of its unsuspecting victims!  Well, I’d estimate the micro-attack happened around 10pm.  By midnight, my left leg was oozing so much clear liquid, it ran don my leg.  By 5am, there was a wide area around the bite that was red & by the following afternoon, my ankle & entire left foot were swollen, and the impact site was still seeping clear liquid! Oh, and blistering.  Don’t forget the blistering!

Now, perhaps this is normal for some people, but not for me!  Even when I’ve been stung, I’ve never had a reaction this severe, which leads me to wonder if my immune system is now super sensitive to certain bug bites post-chemo.  After all, the whole reason my surgery is taking place eight weeks after my pre-radiation chemo is to avoid complications with wound healing.  Not wanting to take any chances, I decided to call Health Link, who suggested I have a doctor look at it. So, off to a walk-in clinic we went, expecting to simply be prescribed oral antibiotics.  In hindsight, Health Link actually suggested I see my family doctor if possible, but that would’ve delayed things by a few days at least, so I opted for the walk-in.  Big mistake!  As soon as the physician heard the “C” word, he was clearly out of his comfort zone, and before we knew it, we were being referred to EMERGENCY!  Yes, Emergency….for a bug bite - albeit, a bug bite from hell, but nevertheless, a bug bite!!!  His reasoning was that they may want to do an ultrasound & put me on IV-antibiotics, which he explained would work faster, so that I could get this cleared up in time for my surgery.

So, into the vortex of the hospital from hell, we went!  Eight hours later, we emerged with stories of Buzz Lightyear & Pirate Porkchop, courtesy of a mom reading to her son across the waiting area, yet more tests and….drum roll please…ORAL ANTIBIOTICS with NO IV in sight!!!  The emergency doctor said that in this case, IV antibiotics wouldn’t have made a difference time-wise.  And after all that, they weren’t really sure if this was my system being hyper sensitive to the bite or in fact a skin infection.  By contrast, the clinic doctor who sent us into a galaxy far, far away, actually went so far to suggest it was a cellulitis, a rapidly spreading skin infection!  But they said we did the right thing, having it looked at quickly, as I do have to be careful being post-chemo & with surgery less than two weeks away.  The frustrating thing is, next time, I’ll think twice about going to a clinic or emergency & just wait however many days to see my family doctor.  Watch, that’ll be the time they’ll tell me I should’ve gone to emergency!  :p Four days of antibiotics every six hours later, it is slowly improving.  Hopefully, it won’t impact my surgery, which is now eight days away.  It’s still pretty red & swollen but it’s better than it was.

Meanwhile, earlier in the week, I got a hold of all my medical reports available to date, as I needed them for insurance purposes.  Now, remember those MRI images on CD from February I never should have looked at?  Queue in the deja-vu!  I really shouldn’t have read my reports either but just couldn’t resist.  In addition to the nodules I already knew about on my spine & ovary, they also discovered one on my intestine.  I don’t even recall them mentioning my intestine, so that totally threw me for a loop!  And then came this gem: “We are unsure of their significance….Although we are not formally classifying them as metastasis at this time, we have chosen to follow them”.  In a nutshell, they have no idea if it’s spread, so they’re playing the wait & see game.  Fast forward now to late June, where the tests reveal the same nodule on my spine but no mention of the nodule on my intestine.  They didn’t bother to check my ovary, since my ultrasound couldn’t find anything back in April.  However, I now have a new nodule that wasn’t there before on my thyroid & the word lesion came up, and yet still, they’re unsure if its significance, saying “There is no evidence of definite metastasis, which to me means, they have no idea at this point!  Still, with nodules on my spine, intestine, ovary & now thyroid, I’m needless to say, a bit worried.  Hopefully, my oncologist will clarify everything next week when we meet before my surgery.  The good news is, the alien hasn’t grown, but it’s a bit bigger than I was initially led to believe.  It turns out, it’s actually 25x13x8.7cm.

As if starring in my own personal episode of When Bugs & Aliens Attack wasn’t enough, there’s MORE!  After nearly two decades with the same company, I learned I’ll be out of a job once my medical eave is done, as the department I work in has permanently closed!  Seriously, Universe, what ARE you trying to do to me?!?!  Enough already!  Fortunately, they’re allowing me to continue my current medical leave for as long as necessary.  Once recovered from surgery, my severance pay & benefits package will last about a year.  Thank god, because finding a job when you already have a disability is hard enough.  Add in the additional complication of cancer scans every three months for the next two years & every six months for the five years following that, and well, let’s just say searching for work could be quite a challenge.  Grateful yet terrified pretty much describes how I am feeling these days!  Anyone know of a good Canadian insurance company that’ accepts cancer patients & survivors???  Trying my best not to panic.  Hopefully his chapter's end will open doors to something better & much more inspiring, a job that i can be proud of rather than being just a paycheque.

They say things happen for a reason, and sometimes I wonder if there just might be something to that.  A week before all hell broke loose job-wise, I began attending the Visualization & Relaxation sessions at Wellspring, and boy are they coming in handy!  Tried my first self-guided meditation last night while out on my deck, alongside the soothing lullabies of my water features. I fell asleep!  D’ya think it worked? ;)

Eight days till the alien gets evicted from my leg!


"I, I, I, will battle for the sun, sun, sun.
And I, I, I wont stop until I'm done, done, done.
You, you, you are getting in the way, way, way.
And I, I, I have nothing left to say, say, say.

I, I, I, I, I will brush off all the dirt, dirt, dirt, dirt, dirt, dirt, dirt.
And I, I, I, I, I will pretend it didn't hurt, hurt, hurt, hurt, hurt, hurt, hurt, hurt.
You, you, you, you, you, are a black and heavy weight, weight, weight, weight, weight, weight, weight.
And I, I, I, I, I, will not participate, pate, pate, pate, pate, pate, pate.

Dream brother, my killer, my lover.
Dream brother, my killer, my lover.

I, I, I will battle for the sun, sun, sun, sun.
Cause I, I, I, have stared down the barrel of a gun, gun, gun, gun, gun, gun, gun. No fun!
You, you, you, you, you are a cheap and nasty fake, fake, fake, fake, fake, fake, fake.
And I, I, I, I, I am the bones you couldn’t break, break, break, break, break, break, break, break!

Dream brother, my killer, my lover.
Dream brother, my killer, my lover.
Dream brother, my killer, my lover.
Dream brother, my killer, my lover.
Dream brother, my killer, my lover.
Dream brother, my killer, my lover.

I, I, I will battle for the sun.”

- “Battle for the Sun” by Placebo



*[NOTE - Post title also inspired by Placebo’s song “Battle for the Sun”, which can be found on their 2009 album of the same name.]