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.]

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.]

Bulletproof Patient - Chemo, Radiation & More!

06/12/15 - It’s been a while since my last update, so I figured it’s about time I put in an appearance here.

Feeling rather emotional today, having finally made it out to Wellspring to check out two of their many programs. During the music jam, I came *this* close to breaking down sobbing during "Puff the Magic Dragon" of all things.  That song brought me to tears as a child, so perhaps it's not that much of a stretch.  However, I think the emotion driving today's tears ran much deeper, sitting in a room with a bunch of strangers, all of us with cancer, singing about friendship, loss & grief.  And you thought it was just a nursery rhyme?  Think again!  That song is heartbreaking!  Even though prognosis is often good for most of us with myxoid liposarcoma in the leg, it still unavoidably makes you confront your mortality - consciously or not.  Singing about little Jackie Paper not coming ‘round anymore hit home like a ton of bricks - and unexpectedly so.  Thank god, I just barely managed to avoid a complete breakdown, *phew*!!!  Something tells me the tunes in that songbook (which is probably 2 to 3 inches thick, by the way!), weren't chosen at random.  There are quite a few lyrics that jumped out at me - from living in the moment to finding strength to look outside yourself & everything else in between.  It's funny how music never ceases to drag emotions out of you, even those buried deep down.  You know, the ones you THOUGHT you were done with?

That said, the acoustic sing-along ended just in time for me to pull myself together.  I then moved on to the women's group, where we spent two hours sharing our own personal cancer experiences & information.  Never thought it was possible to feel grateful & terrified simultaneously, but that was me today.  The group is a mixed group, meaning it’s not limited to just one type of cancer patient.  Thank god, because if it was only my type of cancer, there’d be no one there but me!  What really hit me were the brave stories from those who started out with one kind of cancer only to develop yet another type of cancer after beating the first one.  Two of them in particular, came across as incredibly brave & positive in spite of  being to hell & back not once but twice  & even three times.  Hearing stories like that really makes me wonder, though.  I already know about the chance I could have a reoccurrence in that same leg due to radiation treatment, and I already know about the chance it could metastasize to my lungs or abdomen, but what I'm really curious about now is the likelihood of developing another seemingly unrelated type of cancer later down the road.  From what I’ve observed, it seems to happen quite a lot to people whose cancer originates in an organ.  No idea if liposarcoma survivors are equally or less prone to this same pattern.  I shall have to inquire about that when I meet with my oncologist at month’s end.

Other topics that arose were the issues of being released from hospital too soon & the complications brought on by delays in home care.  Thankfully, I have a wonderful mom who's going to stay with me after my surgery  in a month till I've recovered well enough to manage stairs, but she can only take so much time off work, which means I'll probably need to get home care, so this part of the discussion was particularly insightful.  The removal of the alien in my leg takes place exactly four weeks from today.  The facilitator of the women's group suggested I speak to the hospital NOW to request a social worker to help organize home care well in advance of surgery, so although today was emotionally draining, I'm glad I went even just for that one peace of advice alone.  When I asked my oncologist about home care, he just said the hospital would organize that once I'm on the ward.  Sounds like he may be unaware that some patients are being sent home before they're ready.  Hopefully, I won't be one of them!  Perhaps I should invest in a pair of handcuffs to chain myself to the bed if they try pull a stunt like that on me!  :p

Thank the universe for my dogs who gave me lots of kisses when I returned home.  Nothing beats the warmth of canine  cuddles!  <3

Whew!  Okay, now that I’ve gotten all that off my chest, here’s an update on my chemo & radiation therapies.  After three months of stress & worry over possible side effects, I feel I’ve been extremely lucky.  Unlike one of my hospital roommates who was on the same type of chemo for a similar type of sarcoma, it took two days before I began to experience nausea, which then lasted five days.  Sweets, such as chocolate, began to taste weird & spicy food became turbo charged overnight, but thankfully NO iron-tasting food!!!  It took about a week before I resumed normal eating, though I use that term loosely, since to this day, I still don’t get normal hunger signals like I did before the cancer.  I suspect this is due to the stress response that kicked in when this medical roller coaster began back in February.  Still, it could’ve been a lot worse!  By contrast, my chemo buddy was projectile vomiting from day one & felt miserable the entire time.  You know how people experience survivor’s guilt?  I actually felt chemo guilt, because my response to the exact same treatment was so different from her’s!  Before my much milder nausea kicked in, my biggest challenge was frequent fatigue, which continued during & after, my radiation sessions.  Besides that, I experienced weakness & increased soreness within my leg muscle, skin tenderness & a bit of pealing during & after radiation - the fatigue being the most significant side effect.  Some days I would start out feeling relatively ok but was absolutely exhausted after the radiation session to the point where I’d fall asleep sitting up on the couch in the middle of the day.  Other days I was just tired all the time regardless of how much sleep I got or whether or not I had a session.  But once again, I’ve been relatively lucky.  One day while waiting to go into radiation, I overheard a crying boy who was also undergoing radiation treatments, saying “I'd rather die than go through this again”.  Cancer is a challenge for everyone who goes through but hearing those words come from a child’s mouth really throws you.

Chemo, which was supposed to last three days, ended up stretching to almost four days, due to delays on the day one.  First, the PICCS line insertion ended up taking not one but THREE hours!  The line decided to go UP into my neck instead of down to the large artery near my heart!  As they flushed my system trying to figure out its location, I could hear water rushing through my ear!  Note, there was nothing actually inserted into my ear, so to say this was a surreal feeling would be an understatement!  And every time they flushed me, I could taste the saltwater of the saline solution!   Several flushes & x-rays later, they finally had it where they wanted, so I was taken upstairs to settle into my room & wait…and wait some more.  It was five hours AFTER the PICCS line was complete before chemo even started!  But it wasn’t all bad.  They made me do a funny “dance” before each x-ray, presumably to…  Well, you know, I have no clue why but I’m sure there’s some scientific or medical reason for it!  I just wanted to burst into a chorus of “Y…M…C….A!”, LOL!  :p  Good thing I refrained, though.  My PICCS insertion is STILL healing a month later & I still have bruising around the insertion point.  They sure weren’t kidding when they said chemo can effect wound healing.

Speaking of dancing, during my sixth radiation session, I discover I had the option to have my OWN music playing while undergoing treatments!  Call me easily amused, but I was absolutely ecstatic by this news, because of course, music makes everything better!  So, what better companion to join in my “battle for the sun” visualizations than the melodies of Placebo themselves for my last three sessions!  :D I’m sure they must’ve thought I was nuts, as I laid there tapping my foot & singing along to the tunes in the middle of treatment!  :p  For those wondering, the radiation treatments themselves don’t actually hurt during the session.  It’s the buildup in your system that eventually causes side effects.  Hell, getting off that hard treatment bed hurt more than the session itself!  They had a really neat faux skylight to help you relax, though, that made it look as though you’re looking up at blue sky, trees & fluffy white clouds.  I kept threatening to take it home with me!  Seriously, I wonder how much those cost!

So, two weeks have passed since the end of treatments.  I still have a brain like a civ, concentration isn’t what it once was & fatigue levels are up & down but better than what they were.  My anxiety levels are starting to creep back up, though, as my surgery date looms ever closer, so I’m trying to keep things as stress free as possible.  And then there’s the hair loss, which took longer than expected but alas, it’s happening.  The week after radiation ended, I noticed more & more single strands coming out.  However, by two weeks after radiation, it looked like I lost half a sheep just from what fell out in the mornings alone!  Have you been wanting to take up knitting or perhaps stock up on wool for that winter sweater you've always wanted?! Look no further, just give me a few more weeks & I'll have all the wool you need, LOL!  Oddly enough, I was more amused than distressed by the miniature sheep in my garbage bin.  What freaks me out more are my lop-sided eyebrows!  As they said might happen, I’ve lost the end of one of my eyebrows!  It looks totally weird to me, but that’s probably because I’m more self-conscious of it.  My mom forgot all about it when she came to visit, so it’s nice that it’s less noticeable to others. 

Now that chemo & radiation are done & my energy is getting better, I am finally taking advantage of the local support programs, which I wouldn’t be able to do while working.  Thankfully, my insurance company is allowing me to continue to be off until after I’ve recovered from surgery.  I also plan to use the time to get organized before surgery, both at home as well as with the hospital, and complete the insurance forms I just haven’t had the energy to deal with.  Hopefully, I’ll tackle the latter over the next week or two!  I also have more diagnostic tests coming up, as well asa a pre-surgery consultation with y oncologist to learn how well the chemo & radiation worked. Although radiation may not actually shrink the tumour, it’s supposed to “clean up” the edges, so that my oncologist can get cleaner margins while removing the tumour, thus reducing the amount of healthy tissue that has to be cut away in order to get all the cancer.

And on that lovely note, that’s it from me for now!  I’ll probably post one more update before surgery, which takes place in early July.  I don't know if I"m just lucky or stronger than I thought, but whatever the case, I hope it continues into the next phase of my treatment & recovery!  After all, what doesn't kill you makes you stronger, right?

PS - Many thanks to all the volunteers & participants at Wellspring!  Although today was very emotional for me, it's nice to finally be able to talk to people in person who truly understand.  I truly appreciate your time, support & bravery.  I feel very blessed to have found this organization. :)  And much love & hugs to all my friends & family who've been there for me ove the past few months!  I couldn't have gotten through them without you!

*[NOTE: Title of this post was inspired by Placebo's "Bulletproof Cupid" off their 2003 album, "Sleeping With Ghosts".]

A Million Little Pieces Come Together - Results Day #2.

04/20/15 - After much waiting & a week's delay, I finally got my consultation to discuss the results from all the many, many tests I've had over the past two months, especially those over the past two weeks.  To my relief, the news was mostly good, though I'm not completely out of the woods yet.  There was so much information covered today, there's no way I'll remember it all to share here.  They estimated the consultation would take approximately two hours - we were at the hospital for nearly FIVE!   That being said, here are some of the more important highlights. :)

First, I have a stage three 25x12x8cm tumour, which currently does not appear to have metastasized. [EDIT: I later learned speaking directly to my oncologist that the resident doctor screwed up, and I was actually stage 2B, GRADE 3, 25x13x8cm!]  However, indeterminate spots WERE found in the bones of my abdomen & spine, plus another unusual spot was found on one of my ovaries.  Now, before you panic - I sure did! - the abnormalities found in the bones of my abdomen & spine can also be found in people who do NOT have & have NEVER had cancer, BUT due to the fact that I do have cancer, they have to be vigilant.  So, for now, my specialist is not overly concerned but will continually monitor them.  As for the ovary, that's another story.  Yep, here comes one more test (an ultrasound) to ensure it's nothing to worry bout.  It's possible it could be related to surgery I had 10 years ago, so it may not be significant, but again, better safe than sorry.  So, that'll be checked out prior to starting my treatment, which has been further delayed.  Looks like it'll probably be another two weeks now.  I'll also need to go in for a more in-depth radiation planning session, where they'll determine the best way to go about the radiation, such as position of my legs, etc.

So, to better cope with all the endless waiting, stress & yet more delays, I've decided to take advantage of the hospital's individual & group counselling services, in addition to the closely-matched peer support volunteer available through the Canadian Cancer Society.  They also gave me info on courses patients can take through our local cancer centre.  Haven't had a chance to look  through them yet, but once I have, I'll share more info if they seem useful.  Speaking of which, one very useful service they have on offer is a volunteer driver service to get patients to & from appointments.  It's not only free but it's more flexible than the city's shared ride service for people with disabilities, as you don't have to worry about missing your ride home, should your appointment run longer than expected.

In addition to meeting with my orthopaedic oncologist again, I also met my radiologist for the first time, along with the respective resident-physicians for both specialists.  Think of the residents as  extensions of your primary medical team who fill in the gaps when your primary specialists have other patients to attend to, etc.  It was here where I started to get more answers re: treatment & its short-term & long-term side effects.  Now, keep in mind, everyone's different, and not everyone gets the same dose of chemo or radiation, but this is what they're expecting in my case...

Chemo therapy - Despite the low dose & short duration I'll he receiving, there's still an 80% chance I'll lose my hair but only on top of my head.  It is rare for patients to lose ALL their hair (eyebrows, lashes, etc.), although it can happen occasionally.  Despite being well aware hair loss was likely, the high percentage rate sure threw me for a loop!  They also expect fatigue to be an issue, in addition to bruising more easily, risk of infection, nausea,  change in appetite & taste.

Radiation - One of the most significant side effects will be skin soreness, irritation & peeling comparable to that of a sunburn....   My skin will also become darker in colour & become tighter.  Other side effects are likely include fatigue & mouth sores.  Due to the many changes to the skin, they recommend regularly using powder, such as baby powder, in addition to a medically prescribed cream.  Fortunately, they don't anticipate blistering in my case.  Here's hoping they're right!  Given the large size of my tumour, feeling as if I have a sunburn on the posterior & side of my thigh will be more than enough to deal with, thank you very much!

Long-term side effects to keep in mind after treatment will be an increased risk of fracture years down the road due to the tumour removal occurring so close to my bone, as well as the possibility of secondary tumours due to the radiation.  They said these secondary tumours occur in 25% of the individuals, and if cancer were to reoccur, it would most likely be in the same site as my original cancer.  For the first two years once I'm cancer-free, I'll have to be checked every three months.  Then for each of the five years thereafter, it'll be every six months.  While this sounds like a lot, I'm being assured that my work's insurance company will be required to consider this all as part of my original claim, and thus I won't lose a bunch of sick days over all those appointments. :)

Recovery time will largely depend on how well my tumour responds to radiation & how the surgery goes.  It could take anywhere from one to three months to recuperate from the surgery alone.  It is up in the air how much physio therapy will be required, as this will be determined by how much surrounding tissue they'll end up removing.  What I do know, is regardless of this, a large chunk will be removed from my leg, and it'll look as though someone took a bite out it.  Fittingly, the in scission will be large.  They are going to do everything they can to preserve the nerves & muscle surrounding the area but it's impossible to say that this point what the outcome will be.  That being said, I did ask about my eventual ability to once again stand for long periods of time at, say...a general admission concert gig.  Come on, Y'KNOW this question had to be forthcoming!  ;)  The resident physician said although the muscles in that leg will always be weaker, chances were promising, but of course, no guarantees.  Only time will tell!  Better start compiling my physio-workout music playlist now, haha!  2016 20th Anniversary Tour, here I come!!!  Even if I have to waddle like a duck, I'll be there, someway, somehow!!! ;-)

*[NOTE: Post title inspired by Placebo's song "A Million Little Pieces" off their 2013 album, "Loud Like Love".]

Asking for Answers.

04/15/15 - I think anyone who's ever gone through this journey of fighting cancer will tell you that it's an emotional roller coaster.  One day you'll be coping fine & get a lot done, other days, you'll barely be able to get out of bed or the house - and that's BEFORE your treatment even starts.  The latter totally applied to  me yesterday.  I stayed in my PJ's all day, barely got anything done & had to watch the season premier of Game of Thrones TREE times because I either couldn't retain anything due to lack of concentration or would dose off due to great difficulties sleeping over the past week.

Fortunately, the sunshine returned both literally & figuratively speaking today, and so today has  been a much better day.  Took the dogs for a walk right after I got up & then went to the dentist to get that out of the way while I'm still well enough to do it.  The walk, sunshine & seeing people who, for once, didn't poke me with a needle did me a world of good.  Still tired, but I'm feeling better able to cope for now...

I'm also feeling slightly less stressed after calling Healthlink today re: questions I had in preparation for my consultation & next batch of results this coming Monday.  As the nurse & I were chatting, she recommended a great website done by Alberta Healthcare that has good & ACCURATE information!  I'd also add it's EASY TO UNDERSTAND & is written in plain English.  :)

In particular, I've been wondering - or more aptly STRESSING - about my upcoming chemo & radiation therapy, as I had no idea what to expect.  The above mentioned site has answered a lot of questions, and although some of the answers aren't pretty, it still really put my mind at ease.  Here are links to the chemo & radiation sections:

Chemotherapy: https://myhealth.alberta.ca/health/pages/conditions.aspx?Hwid=tf3284
Radiation treatment: https://myhealth.alberta.ca/health/tests-treatments/pages/conditions.aspx?Hwid=hw206439

If the above links don't work, just go to https://myhealth.alberta.ca and type either "chemo" or "radiation" (without the quotes) in the search box found on the upper right corner, then click the first link that comes up in the search results.

Also, for those here in Canada either living with cancer or who have a loved one fighting the disease, I found this yesterday (one of the few things I managed to do!) @ the Canadian Cancer Society's website, where they talk about their free peer support program.  If the counselling through the hospital isn't free or covered by my insurance, I'll probably check this out.  Scratch that.  I *WILL DEFINITELY* check it out regardless.  I need all the help I can get right now!  I also plan to inquire tomorrow what sort of support my employer's *free* EAP (Employee Assistance Program) offers specifically for cancer patients.

*[NOTE: Post title inspired by the Placebo song "Ask for Answers" off their 1997 album "Without You I'm Nothing".]