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.]

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".]