First Anniversary Cancer Free! :)

07/10/16 - Well, on a happier note, I have officially made it to my first year anniversary of being cancer free (my limb sparing & life saving surgery was exactly one year ago today!), and I am happy to say that I have finally calmed down from last week! I have decided I will go to my next appointment, but just take their lead and let them do all the asking.  I figure this way, I will at least be able to get all the tests that they are willing to prescribe me for the time being.  Hopefully, the appointments will go more smoothly that way without them making me feel like a five-year-old!  I've also decided to mark the occasion of my first anniversary of being cancer free with a tattoo. Now just to decide exactly what to get!  For sure it'll have the yellow ribbon that symbolizes sarcoma, plus it’ll most likely have a butterfly or flowers. It will also feature some lyrics from, yep, you guessed it, Placebo!   I am also going to take part in the #KnowSarcoma campaign one of our national cancer organizations has going on for sarcoma awareness month (July), and I am also going to contact the cancer society to see what would be involved in becoming a peer support telephone volunteer. I would really like to be able to give back to new sarcoma patients who undoubtedly have a million questions like I did after I was diagnosed.


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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".]

Disassociative - In a Crowd But Still Alone

05/07/15 - Being a self proclaimed realist - at times, perhaps even a pessimist - it has come as quite a surprise to me over the past month how upbeat I seem to come across as to people, and how my light, energy & sense of humour apparently shine through.  I've lost count of the number of times I've been told how positive & strong a person I am.  It's to the point where I'm almost starting to believe it myself.  Almost.  Perhaps it is for that reason, I hesitate to post what comes next. When I originally started this blog, it was not only meant as a form of catharsis for myself but also a way to help others walking a similar path.  However, with any journey there are ups AND downs, and with myxoid liposarcoma being so rare, there are a LOT of downs.  I want those fighting this disease to know there are others in the same boat, so I'm left with no choice but to bare my soul in the words that follow, because this needs to be said.

Having read the struggles of other liposarcoma fighters & survivors, I see I'm not alone in that this disease is never far from our thoughts, no matter how hard we try to fight it & no matter how brave others think we are.  Twice now this past week, I've noticed that while spending time with family &/or friends, I feel fine while we're all together, but as soon as everyone leaves, suddenly a profound feeling of sadness comes over me.  Upon a bit of reflection, the only explanation I can come up with is that, both literally & figuratively, their lives have gone on, whereas mine's been stuck in an inescapable limbo.  It's always with me & although I have occasional moments where I manage to briefly free my mind, it's never far off... I feel like my world's been on hold for a month since getting my diagnosis as I go from one scan & doctor appointment to another.  Rarely with those close to me, am I lost for words, but I'm starting to get that way, because lately I see doctors & nurses more often than I see anyone else. Also, with just four "days of freedom" left before starting my first ever round of chemo & radiation, things are starting to get real & fast. My life was already changed forever a month ago but I feel like it's *really* never going to be the same after treatments begin...  Ironically, it was exactly one month ago today that I got my diagnosis.

Yesterday, I joined a local cancer support organization called Wellspring, which offers a ton of completely free wellness programs for those facing any type of cancer, so hopefully this will help combat these feelings of isolation.  But first, I must get through the next 2.5 weeks of treatments.  Hoping this will be the first and last time I go through this, but with recurrence being a very real possibility within my lifetime, I'm bracing myself in the knowledge this may only be the beginning... Scans every two (or three?) months for the next two years, then every six months for five years.  This isn't going anyway any time soon, even if I do win round one of the battle.

It's been a while since I posted a song of the day, and this seems like a perfect time to bring that back.  Believe it or not, for once it's not  a Placebo song but rather my other musical favourite, Marilyn Manson!  :)  Can't believe in three years, this song will be 20 years old, but it describes my emotions  perfectly as though it was just written yesterday.

Oops, well, so much for today's post being a Placebo-free zone!!!  Tthat lasted all of two seconds, LOL!  I'm actually going to post two songs of the day, the second being "One of a Kind" by Placebo from their 2006 album "Meds".  Dear Universe, when I had these lyrics tattooed on my body just four days before being diagnosed, having this very rare cancer wasn't exactly what I had in mind!  :p

*[NOTE: The title of today's post was inspired by lyrics from two songs: "Disassociative" by Marilyn Manson, which can be found on their 1998 album, "Mechanical Animals", and "One of a Kind" by Placebo off their 2006 "Meds" album.]

Without It, I'm Nothing - Support in the Community, Part 2.

04/25/15 - So, I decided to take advantage of the FREE counselling service available to cancer patients in my province.  Ideally, I'd hoped for group counselling to further share experiences with others who've gone through this same journey.  But, of course, as my tattoo declares, I am "one of a kind" or at least one of very few.  Myxoid liposarcomas are so rare there are no in-person support groups available, only individual sessions.  My stress levels decreased slightly since learning it appears NOT to have spread, so I nearly didn't go to the individual counselling...BUT...a conversation I had with a manager at the Canadian Cancer Society changed my perspective.

She mentioned that although I'm doing relatively okay right now (and I do mean relatively, every day is still a constant uphill battle), there will likely come a time where I feel the need for extra support beyond friends, family & online support groups.  So, heeding her advice, I went to my appointment, and I'm glad I did.  She gave me practical advice on dealing with work & insurance concerns I had, and she gave me a few brochures re: support services available in addition to counselling.  For instance, there are courses cancer patients can take re: managing stress & relaxation, yoga, meditation, etc.  She also mentioned that her door is always open, as the free counselling for cancer patients is available for eight years if needed.  Be sure to check in your area to see if similar benefits are available.  I am so glad I live in Canada!

To my delight, the first pamphlet is available online, so I'll post the link below.  If I find any of the others online, I'll be sure to add to this list.

The Emotional Facts of Life with Cancer: A Guide to Counselling & Support for Patients, Family & Friends: http://capo.ca/docs/bookletREVISED.pdf.

As for the lack of group support specific to myxoid liposarcoma, I was eager to take advantage of Cancer Connection's detailed peer support matching program.  Wanting to make the best of an extremely challenging situation, I figured it'd be the next best offline alternative outside the Facebook group I found, and I was right.  What they do is get a few details about your type of cancer, the journey you've been on so far & your current situation, and then they do their best to match you with someone whose experience has been similar to yours in as many ways possible.

Ever the realist, I suspected they'd have a hell of a time finding even someone with ANY type of liposarcoma never mind the *myxoid* variant, and indeed this was the case.  However, do not let this discourage you if you're suffering from one of these rare cancers no one's ever heard of.  What they did instead, was find three volunteers for me to choose from, of which I chose two.  The first one had sarcoma in their leg removed via surgery but no other treatment, while the second person had a sarcoma in their foot, surgery & radiation.  Both sarcomas they had were also very rare.  So, between the two of them, I was able to get a lot of questions answered & find commonalities despite having different types of sarcomas.  And it wasn't just a quick chat either.  Combined, I spent a good 2.5 hours of my Saturday afternoon chatting with them.  Words cannot express how grateful I am to both of them for not only taking time to talk to me but for sharing a very difficult period in their lives.  Once I've come out the other side of my sarcoma, I will seriously consider giving back by signing up to be  a peer support volunteer myself.

*[NOTE: The title of  this post was inspired by the Placebo track "Without You I'm Nothing" from their album of the same name.]

Without It, I'm Nothing - Support in the Community, Part 1.

04/18/15 - After experiencing a roller coaster of emotions throughout the week & some days coping worse than others, I finally picked up the phone to call the Canadian Cancer Society whose website I'd briefly checked out earlier in the week but felt to overwhelmed to really deal with at the time.  I'm glad I finally took that baby step.  As mentioned in my previous post, they have a peer support program, where they'll do their best to match you not only with someone who's had cancer themselves, but they'll try to match you up with someone who's been through the same kind of cancer you actually have, so that the support you receive will be more specific to your situation.  I agreed to call them back once I find out if it's spread or not, as the experience of someone with just a tumour vs someone whose cancer has spread may be quite different.

In addition to the detailed peer support match, I also discovered Cancer Connection, an online support community for cancer patients, also offered by the Canadian Cancer Society.  I am really grateful to have found this outlet for support, as it will hopefully mean less leaning on friends & family whenever I'm feeling stressed out & fewer distressed Facebook posts.  While I still plan to update this blog, I'm going to try to post less about IT on Facebook, leaving HAPPY stuff for FB & the more serious stuff for my blog & the support site.

Last but not least, although they list a number of options for local places to get wigs (some of which are rather pricy IMHO!), the Canadian Cancer Society themselves actually has a bank of donated wigs AND headscarves, which are FREE of charge  & on loan for as long as you need them during your treatment.  Note, an appointment is required, so contact your local CCS before heading down for a wig or scarf.  They also suggest coming in prior to starting treatment, so that you have them before any hair loss begins.

So, on Tuesday, the day after I get my next batch of results, I'll be going in for my wig & headscarf - no they won't let me dye my wig purple, I already asked, LOL! - and I'll be following up to get that detailed peer support match.  After two weeks of trying to deal with with all this on my own with just friends & family for support, I am finally ready to take that next step.  While I couldn't have gotten through the past two months without my friends & family, there's only so much they can do, so I'm really looking forward to connecting with others who have &/or are going through the same thing.  Something tells me I'll be needing them a lot in the months & possibly years ahead.  Unless they've  been through cancer themselves, people really have no idea.  I've even had people suggest I shouldn't be worried because it's "just a tumour", to which I responded that it could still be a medium to high grade tumour & that this kind of tumour has been known to spread, so shrugging it off as "just a tumour" is much easier said than done!

That being said, I'm finally on the home stretch of the waiting game.  Hopefully, in two days, they'll have some serious answers as to what stage Im in, chances of survival, whether it's spread & TREATMENT DATES, so I can make my insurance happy & start moving forward from this limbo I've been stuck in over the past two weeks.  This will be my last update till then.   I'm off to do my best at imitating a relaxed human as I try to enjoy the rest of the weekend.

PS - One thing I struggled with over the past week is trying to keep my inner "happy" going.  Being the realist that I am, this can be quite a challenge at times.  But I did manage to succeed here & there, with a few setbacks in-between.  The thing to try to do is pick yourself up, dust yourself off & remember that things might seem different in the morning.  I also try to find things that make me happy, such as talking to or spending time with a friend, walking my dogs, listening to music or even swooning over pictures of my favourite singer/songwriter for a certain band (three guesses as to who THAT is, LOL!).  Point being, try to find things that not only make you happy but that take your mind off things, even if it's just for a while.

[EDIT - 04/19/15] - Found two more great resources. :)
- Liposarcoma Survivors - Facebook group for & by other sarcoma survivors & warriors.  By far one of the best resources I've found so far.  Just connecting with others who've been through this has taken a huge weight off my shoulders!
- The Sarcoma Alliance - A site made for & by sarcoma survivors & their caregivers.  Has some good info on there, re: diet tips for post-radiation, as well as some additional sarcoma info, just a name a few of the good things on there.


*[NOTE: Post title inspired by the Placebo song & album of the same name, Without You I'm Nothing".]

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".]