The World Stood Still Today

01/11/16 - The earth stood still today when I heard the news of David Bowie's passing.  I felt like someone had punched me in the stomach. I may only have a few of his albums, but almost every single artist I love has been influenced by this man in one way or another.  For as long as I can remember, he's been a part of my music universe, directly or indirectly.  I am in total shock and disbelief. His secret 18-month battle with cancer was lost just days after his 69th birthday. Such a huge loss for music fans everywhere.  :'(

Sometimes

01/03/16 - When a song comes into your life precisely at the right moment,  as if to mirror your soul...

Something's telling me I need more than just this one week in my pajamas. So, to my friends and loved ones, please don't take it personally if I turn down more than a few invitations over the next while. I need to take some time to myself to process, well...EVERYTHING..

I've read other survivors' talk about experiencing depression & anxiety after treatment & physio finally ends.  I don't know if this is that or if my body, mind & soul just need to recover from the past 11 months.  But whatever "this" is, it's more than me just wanting to crawl into my introverted shell.  I feel like I've been in "fight mode" constantly for nearly a year now, so consider this my "time out".

Coming Undone & 2015 Farewell - Processing the Flood of Emotions When Treatment Ends

12/31/15 - Well, it’s New Year’s Eve as I write this, and boy am I glad to see the back of 2015!  When I spoke with a counsellor soon after diagnosis, she told me she often sees patients return towards the end of their treatment, and it’s only now that I’ve gained enough insight to understand why.  The past few weeks have been an emotional roller coaster, as I cope with the anxiety & fears of a possible recurrence, wondering could this be my last Christmas & if this is just the calm before the storm.  I realized the other day that I pretty much jumped straight from physiotherapy into socializing three times as much as I’d normally prefer out of fear.  Fear that it’ll come back, and with a vengeance.  Fear that funny little lump on my elbow that i never noticed before is an early sign of METS.  Fear that  little dry cough is also a sign of METS.  Fear that I won’t be around in ten years.

Adding fuel to the fire, a fellow survivor found a research-based nomogram by the Memorial Sloan Kettering Cancer Centre that shows estimated survival rates specifically for liposarcoma patients, and it appears that resident physician (the one my oncologist initially had answer my many questions because he was strapped for time) may not have been as forthright about survival rates as one would expect.  Remember, this is the resident who gave me my grade instead of my stage, plus she’s the one who told my mom & I she’d be right back but then never returned!  So, needless to say, I don’t have a lot of faith in anything she’s told me.  But back to the nomogram…  It made me realize, I probably don’t have as much time left as I was originally lead to believe.  I mean, I pretty much figured that anyway due to my high (>25%) round cell component, but it appears the survival rates for even those with as little as >5% round cells are reduced.   And while the realist in me knows I could always die of something else, like a car or a plane crash, it’s still quite daunting realizing that if nothing else takes me out, the cancer most likely will, even if it’s years down the road.  The chances of a recurrence or distant metastasis are fairly high.  So, even though I’m clear now, it could be waiting in the wings & show up in my lungs a few years from now.  I can deal with that, but  I just want the truth out of my medical team.  So, I definitely plan to show my oncologist the nomogram when I see him in March.  I realize some people wouldn’t want to know, but being single without a spouse to fall back on, I need to know how I should prepare for the future.   For instance, is retiring in 20-25 years even a realistic possibility, or should I be saving like someone in their 70’s who’s likely only got an average of 10-15 years left to live?

Another thing that’s knocked the wind out of my sails lately is “survivor’s guilt”.  Last week there was a news story about a 22-year old woman that lost the love of her life a month earlier when he passed away suddenly of unknown causes.  Meanwhile, she, herself, was dying of stage four osteosarcoma in her leg & her last wish was to make it long enough to be able to hold her yet unborn baby.  Well, she made it, as her son was born Christmas day, but that baby will never know either of his parents.  Yet here’s me with no children, other than the four-legged kind, and no significant other, yet here I sit cancer free.  Don’t get me wrong, I am grateful, but what the hell is the universe thinking???  If I wasn’t an agnostic-atheist, I’d swear the angels got our paperwork mixed up! Fortunately, I was quick to reach out for support from the online liposarcoma group I belong to, and it appears I am not alone with this paradoxical range of emotions.  This knowledge alone brings me comfort & takes the edge away from this whirlwind of ups & downs I’ve been feeling lately.

Offline, I've tried sharing a bit about these post-treatment emotions with a few close friends but it was obvious they just didn't get it.  After all, how could they?  Only those who’ve had cancer themselves can truly understand.  It's for this reason, I’ve noticed myself starting to hold back with friends and family about how I’ve been feeling - quite the opposite to when I first began my journey.  They have moved on now that I am cancer free, but for those of us who’ve faced cancer directly, “cancer free” is a bit of an oxymoron, because once it’s touched you, you’re never truly “free”.  It’s always in the back of your mind, and there isn’t a day that goes by where you don’t think about it, even if it’s just briefly.  If forever changes your views on life, for better or worse.

Speaking of holding back, I've decided to be more selective with whom I tell in person about my having had cancer.  i have lost count of the number of times I’ve heard “Oh…BUT you look good!” after telling someone I’m a cancer survivor when they ask about my leg.  I’m not a small girl, so although I lost weight due to stress & lack of appetite, I don’t look like the stereotype people have of what a cancer patient should be.  On top of that, despite loosing a lot of hair, I never did go completely bald.  It just looks like I got a major haircut.  So, to anyone reading this who’s never had cancer themselves, please note that what we as past & present cancer patients hear when you tell us “Oh…BUT you look good...” is “Oh…you don’t LOOK like you had cancer!”  Seriously people, stop & think before you open your mouth! :p  On the other hand, I’ve met a few fellow survivors in the real world by being so open, so choosing to be less so is bit of a double edged sword...

Last but not least, the thought of returning to work…or in my case, looking for a new job for the first time in over a decade after being laid off sent my anxiety so sky high that I’ve decided to take one or two more months to truly relax before starting my job search.  Sure, some people might think being on medical leave for eight months would be enough of a break, but it’s been anything but relaxing.  So, I’ve decided to be good to myself & give myself this time to properly unwind. For one thing, doing so will help me to be more resilient once I do return to work, and it’s not like I’ll ever get this kind of free time again, unless well…you know, but then that will be anything but relaxing!  So, the first week of 2016, I plan to spend in my pyjamas! :p  Then I plan to continue my endeavours of learning the ukulele & lose myself in my e-books.  I also want to work up to riding my elliptical for five hours a week.  Right now I’m at three hours a week.  I want to find that wonderful balance I once had between my introverted “me time” & hanging out with friends.  I'd also like to do a bit of soul-searching as to what I want in my next job & employer.  While I’ll likely end up in a similar line of work, I don’t want to just settle for the first thing that comes along.  Life is too short to spend it working for a company that makes you miserable.  Most importantly, I plan to enjoy this extra time with my fur-kids (my dogs), as one of them has a health condition which will eventually end his life.

Still, even once I do resume said job search, the job market right now in my province is pretty tight.  To say we’re in a recession here would be an understatement.  So, whether I like it or not, it could be quite a while before I manage to return to the workforce.  This presents another challenge, as many other survivors I’ve chatted with online say returning to work really helped.  But what if there’s no work to return to?  I might look into volunteering in the spring or summer if something still hasn’t cropped up by then or those elusive tour dates I’ve been waiting for still aren’t announced, but for now…pyjamas!  Yes, pyjamas!  ; )

*[NOTE: Post title inspired by the Placebo songs "Come Undone" & "H.K. Farewell", which can be found on their "Battle for the Sun" & self-titled debut albums respectively.]

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".]

Passed the Test - First Four-Month Followup & Scans

11/09/15 - Saw my surgical oncologist today.  He only had results from my chest x-ray & is still waiting for the ultrasound images which should hopefully be in over the next few days, but the chest x-ray came back NED (no evidence of disease)!!!  :)  What a huge relief!!!  With regards to my ovarian cyst, I didn't press about the disappearing & reappearing cyst saga (I could swear he told me it disappeared several months back, but the ultrasound tech said it was definitely visible!), but I did ask about it & he suggested it's been there for a long time but said he'd forward the results to my family doctor, and that it's best to followup on that with her.  I'm sure she'll send me off to a gynaecologist, but I've decided I'm not going to stress about it, because he said it's not related to the myxoid liposarcoma, plus it's not causing me any pain.

As for my ongoing surveillance plan, it's a bit different than I originally thought.  Rather than every three months for two years & six months for five years, it'll be first two years: chest x-ray every four months, MRI every six months & CT scan of abdomen & pelvis annually.  Then for five years: x-ray/MRI every six months & CT annually. Then we review at that point on what to do going forward.  It was suggested by a fellow liposarcoma survivor that he was prescribing CT scans less frequently than some doctors to reduce my radiation exposure, and this is indeed correct.  That's exactly why we're only going with a CT scan annually. :)  Another interesting thing he said that in all his time treating myxoid sarcoma patients, he has yet to come across someone with METS (metastasis) in the abdomen *who didn't also* have METS in the lungs - another reason to reduce the exposure to CT scans.  

It was funny, he kept saying I should've been a doctor because of all the reading & research I do!  I think it's both a blessing & a curse for him, because I keep him on his toes & always have a bunch of questions, LOL!  Anyway, I'll keep you posted on the ultrasound, where they are also checking my kidney on my right side, but given what he said today, I have a feeling it's going to be fine.  Cross all your appendages for me there are no surprises!  One last thing, he said that I will likely have weakness in my leg for the rest of my life, even with all the physio.  Hopefully, time will surprise both of us, but with the way my leg feels these days, I think he’s right.  I’ve come a long way, though!  Still working on that turbo-wobble for Placebo’s 2016 tour, though! ;)

*[NOTE: Post title loosely inspired by a line out of "Pure Morning" by Placebo found on their 1998 album, "Without You I'm Nothing"]