So Happy It's Gone! - Four-Month Followup (Cont'd)

Great news!  My ultrasound results came in & everything appears stable compared to my last one from April, so I can officially say that I am still cancer free!  Yay!!!  But booo, because now that means I’ll be officially laid off at the end of this month if I don’t find a job at my previous employer ( but that’s not likely to happen, since they’re closing or moving all the departments I would’ve been interested in applying for!), but at least I can FINALLY move on with the rest of my life & start looking for work elsewhere!  I’d been wanting to wait till my first four-month surveillance before moving forward, just to err on the safe side!  Wow, I feel like a huge weight has been removed from my shoulders!  Now, I am well aware this is still very early days, and there’s always a very real possibility *it* could return, but for now, I can relax & move forward…well, once my physio is done in a month, that is.  I’m on the home stretch now!!!  :)  Oh, and I definitely have ovarian cysts, but as mentioned in my post from yesterday, they’re totally unrelated to my myxoid liposarcoma & I’m not in any pain, so all is well.  That’s it from me for now till probably next month when my out-patient physio finally ends!  OMG, I am so giddy, I can’t wait!!! Placebo 2016 tour here I come!!!  Thank you to everyone who's supported me over the past nine months! I couldn't have done it without you!

*[NOTE - Post title inspired by the song "Happy You're Gone" by Placebo off their 2009 album, "Battle for the Sun".]

"Pity Party" of NONE! I'm a Fighter & Survivor, NEVER a "Victim"!

10/30/15 - Where has the time gone!  I’ve been meaning to post here for ages now but have been so busy concentrating on my recovery that, before I knew it, three months had passed!  Apparently, some of you (Wow, there’s actually more than three people reading this? LOL! ;) :p) have been wondering what happened to me, so I guess an update is in order!  But first, a little something I need to get off my chest...

Call us fighters, survivors or even warriors but NEVER call us “victims”!  THIS was what came to mind the other day, as I read a post on Facebook that, while penned with the best of intentions, was clearly written by someone who’s never had cancer themselves.  Everyone’s experience is different, and although not all of us are lucky enough to win the battle, we are NOT “victims” to be pitied!  We are just everyday people like the rest of you who just happen to have some extra challenges to deal with!  It’s posts like that & the  cringe-worthy reaction I received from one of my non-cancer related specialists that really give me pause for thought.  During the past year, I’ve been commended over & over again by others, including friends whose lives were previously touched by cancer, for being so open about my personal journey.  One friend spoke of feeling in the dark when another of her loved ones was much less open about their cancer experience - a stark contrast to my approach.  I never understood why anyone would want to hide such a significant aspect of their life from those around them, especially close friends & family.  But now I get it.  I really do.  But that was just never a choice for me.  For my own sanity, I needed to write this journal & reach out to those around me, because quite frankly, I was scared shitless & would’ve gone insane if I’d held it all in.

As one of the many medical professionals once said to me this past year, I am an information seeker, so burying my head in the sand & pretending it wasn’t happening just wasn’t an option, and talking about it with others actually helped me deal with things, because no matter what you do, it’s always on your mind, even if it’s lying dormant for a while.  There isn’t a day that you don’t think about it at some point.  And even once you’re told you’re cancer-free, it’s always there.  As an announcer on CTV News recently stated while reporting on Rob Ford’s suspected recurrence of pleomorphic liposarcoma, anyone who’s survived cancer will tell you, the biggest fear is that it will come back.  Seeing Rob Ford hold back tears as he spoke of how far he’d come only to have to start “it” all over again really struck a chord with me, and I’m sure every other cancer survivor out there.  My heart truly goes out to him & his loved ones.

That being said, I have my first post-surgery chest x-ray in two days, followed by a an appointment the following week to discuss the results with my oncologist to find out whether or not I'm still cancer free or if it’s spread to the lining of my lungs or heart. I also want to request an ultrasound or CT scan, as I’ve noticed an imbalance in the way my body feels around my ribs on one side.  Hopefully, it’s just me being overly paranoid about the slightest idiosyncrasy, but we all know what happened the last time I ignored something like that, so I’m not going to ignore it this time!  Still, here’s hoping my news will be happier than Mr. Ford’s.  To say I am experiencing “scanxiety” right now would be an understatement.  But I’d better get used to it.  Got another seven years of this “fun" to come every three to six months, and even once that’s over, I’ll need to have tests for the rest of my life, but hey, at least I am here to have the scans in the first place, so it could be worse!

Whew!  Now that I got that out of my system, here’s an update on the last three months!

In early August, nearly a month after surgery, my stitches finally came out & I was discharged from home care.  Thankfully, that wasn’t nearly as painful as when my foot-long drain was pulled a week earlier!  However, the nurse MISSED a few, which actually impeded wound healing, so eventually in early October, I took matters into my own hands & managed to pry the remaining sutures loose, cutting them out on my own!  Keep in mind, that these stitches were on the back of my thigh, so lets just say I had to contort myself into some rather interesting positions to get the job done!  It sure was worth the effort, though!  The extra sensitive trouble spot quickly expedited healing from that point on!  Sure, I could’ve returned to the hospital to get them to do it, but my thought on that was, I already went once & they buggered it up then, “If you want something done right, do it yourself!"  So, I did just that, being sure to thoroughly sanitize before, during & after!

Finally having the stitches removed allowed me to progress into off-site physio in mid-August. It wasn’t long before those six exercises  prescribed in hospital ballooned and the number keeps growing to this day!  Currently, at the time of writing, I'm up to 23 daily exercises at home that take over an hour to complete, in addition to 2 hours & 20 minutes of recumbent bike throughout the week, one to two hours of elliptical each week, walking my dogs 4-5 times a week and a few other exercises limited to the actual physio clinic due to the fact I don’t have the equipment at home.  I was also encouraged to purchase a yoga ball & resistance band as part of my physio plan, which have really helped.  The other part of my physio involves my therapist working to break down the scar tissue, which can be quite painful but will reduce chronic pain in the long run.  I swear, my theme song right now should be “It’s the Physio that Never Ends”, LOL! ;)  Fortunately, the end is near, as I’ve only got three more weeks of off-site physio, followed by a month break before my final one or two sessions to tie up any loose ends.  Oh, I can’t wait!!!  While I’ll likely still need to continue with at home physio, I’m really looking forward to getting my life back, and the end of formalized sessions will be a step in that direction!

How does one stay motivated to do all that physio, you ask?  Well, let me tell you, it’s not easy!  The first four months were great - I did nearly every single exercise religiously every single day.  But by October, I was starting to feel a little challenged in the inspiration department!  So, what I did was create an inspiration board with pictures of my favourite band & a photo of me with friends at one of said band’s shows.  I rode my elliptical for an hour straight the other day with the inspiration board propped up in front of me, so I guess you could say it’s working!  :)

All this hard work has really paid off, though.  Gone are the crutches & walker, all the rental equipment/aides have been returned & I have lost 12 lbs since surgery without even trying!  And although I still walk like a duck, I’ve come a LONG way in the past three months!  I can even touch my toes with a bit of bending at the knees, the neuropathy & other nerve pains have improved (though they're not gone entirely) and to my delight, I can once again get down on the floor (very carefully, I might add!) to hang out with my beloved fur-babies!  <3   My next goal is to one day be able to run without looking like a drunken weeble-wobble, in hopes of making it near the front at all those Placebo gigs I’ll be attending next year!  Yes, a girl’s gotta have her priorities!  It’s all about the music!  And the Molko!  Don’t forget the Molko!  ;) <3

Speaking of which (music that is!), September saw me embark on my endeavour to reconnect with my musical brain, as I began taking part in Wellspring’s music programs for those touched by cancer.  In particular, I started both the ukulele class & drumming circle I’d missed during summer, and I must say I’m really enjoying them!  I have a whole new level of respect & admiration for anyone talented enough to play a stringed instrument & do it WELL!  Drumming circle is my favourite, though, because it doesn’t matter about all the music theory I’ve forgotten over the years.  Anyone can do it & you don’t have to fight with your fingers trying to get the hang of chords!  You just lose yourself in the drums & it’s simply amazing!  One thing we do each week is play specifically for two members of the circle, surrounding them as they lay down on chairs in the middle of the circle.  As we play, we focus our energies on whatever they want the healing-focus on.  For instance, it could be something as simple as finding peace or it could be something more serious such as chronic pain or a recurrence.  I was brave enough to volunteer to go into the circle during my first time, and it was such a surreal feeling hearing the music move around me as the others walk around playing various percussion instruments!  And the healing touch at the end was, well, a nice touch - and completely optional, I might add. :)  Music has been found by scientists to have great healing power, and I believe it.  Amongst other things, it reduces stress hormones & depression by creating a natural high with the production of dopamine, which also helps increase energy.  It’s no wonder there are so many music programs at Wellspring. :)

Still on the topic of Wellspring, I also finally got to take part in that laughter yoga I’d been wanting to try for years!  Although, I only did one session due to its early morning start-time, I highly recommend EVERYONE try it at least once in their lifetime!  There’s actually a science behind it, as well.  Around 1995, it was invented by a doctor in India who felt his cancer & stroke patients’ lives were just too stressful & in need of more joy.  Thus, laughter yoga was born!  But it’s not just all jokes & smiles.  Laughing, whether real or fake, provides the body with increased oxygen, which boosts both energy & immunity.  The instructor even went so far as to suggest that a body with increased oxygen is inhospitable to cancer cells, so there just might be something to that old adage, “laughter is the best medicine”!

[NOTE: Post title inspired by the bonus track "Pity Party (of One)" by Placebo from their 2013 album "Loud Like Love"]

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.]