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".]
Tuesday 10 November 2015
Monday 9 November 2015
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"]
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"]
Saturday 31 October 2015
"Pity Party" of NONE! I'm a Fighter & Survivor, NEVER a "Victim"!
10/30/15 - Where has the time gone! I’ve been meaning to post here for ages now but have been so busy concentrating on my recovery that, before I knew it, three months had passed! Apparently, some of you (Wow, there’s actually more than three people reading this? LOL! ;) :p) have been wondering what happened to me, so I guess an update is in order! But first, a little something I need to get off my chest...
Call us fighters, survivors or even warriors but NEVER call us “victims”! THIS was what came to mind the other day, as I read a post on Facebook that, while penned with the best of intentions, was clearly written by someone who’s never had cancer themselves. Everyone’s experience is different, and although not all of us are lucky enough to win the battle, we are NOT “victims” to be pitied! We are just everyday people like the rest of you who just happen to have some extra challenges to deal with! It’s posts like that & the cringe-worthy reaction I received from one of my non-cancer related specialists that really give me pause for thought. During the past year, I’ve been commended over & over again by others, including friends whose lives were previously touched by cancer, for being so open about my personal journey. One friend spoke of feeling in the dark when another of her loved ones was much less open about their cancer experience - a stark contrast to my approach. I never understood why anyone would want to hide such a significant aspect of their life from those around them, especially close friends & family. But now I get it. I really do. But that was just never a choice for me. For my own sanity, I needed to write this journal & reach out to those around me, because quite frankly, I was scared shitless & would’ve gone insane if I’d held it all in.
As one of the many medical professionals once said to me this past year, I am an information seeker, so burying my head in the sand & pretending it wasn’t happening just wasn’t an option, and talking about it with others actually helped me deal with things, because no matter what you do, it’s always on your mind, even if it’s lying dormant for a while. There isn’t a day that you don’t think about it at some point. And even once you’re told you’re cancer-free, it’s always there. As an announcer on CTV News recently stated while reporting on Rob Ford’s suspected recurrence of pleomorphic liposarcoma, anyone who’s survived cancer will tell you, the biggest fear is that it will come back. Seeing Rob Ford hold back tears as he spoke of how far he’d come only to have to start “it” all over again really struck a chord with me, and I’m sure every other cancer survivor out there. My heart truly goes out to him & his loved ones.
That being said, I have my first post-surgery chest x-ray in two days, followed by a an appointment the following week to discuss the results with my oncologist to find out whether or not I'm still cancer free or if it’s spread to the lining of my lungs or heart. I also want to request an ultrasound or CT scan, as I’ve noticed an imbalance in the way my body feels around my ribs on one side. Hopefully, it’s just me being overly paranoid about the slightest idiosyncrasy, but we all know what happened the last time I ignored something like that, so I’m not going to ignore it this time! Still, here’s hoping my news will be happier than Mr. Ford’s. To say I am experiencing “scanxiety” right now would be an understatement. But I’d better get used to it. Got another seven years of this “fun" to come every three to six months, and even once that’s over, I’ll need to have tests for the rest of my life, but hey, at least I am here to have the scans in the first place, so it could be worse!
Whew! Now that I got that out of my system, here’s an update on the last three months!
In early August, nearly a month after surgery, my stitches finally came out & I was discharged from home care. Thankfully, that wasn’t nearly as painful as when my foot-long drain was pulled a week earlier! However, the nurse MISSED a few, which actually impeded wound healing, so eventually in early October, I took matters into my own hands & managed to pry the remaining sutures loose, cutting them out on my own! Keep in mind, that these stitches were on the back of my thigh, so lets just say I had to contort myself into some rather interesting positions to get the job done! It sure was worth the effort, though! The extra sensitive trouble spot quickly expedited healing from that point on! Sure, I could’ve returned to the hospital to get them to do it, but my thought on that was, I already went once & they buggered it up then, “If you want something done right, do it yourself!" So, I did just that, being sure to thoroughly sanitize before, during & after!
Finally having the stitches removed allowed me to progress into off-site physio in mid-August. It wasn’t long before those six exercises prescribed in hospital ballooned and the number keeps growing to this day! Currently, at the time of writing, I'm up to 23 daily exercises at home that take over an hour to complete, in addition to 2 hours & 20 minutes of recumbent bike throughout the week, one to two hours of elliptical each week, walking my dogs 4-5 times a week and a few other exercises limited to the actual physio clinic due to the fact I don’t have the equipment at home. I was also encouraged to purchase a yoga ball & resistance band as part of my physio plan, which have really helped. The other part of my physio involves my therapist working to break down the scar tissue, which can be quite painful but will reduce chronic pain in the long run. I swear, my theme song right now should be “It’s the Physio that Never Ends”, LOL! ;) Fortunately, the end is near, as I’ve only got three more weeks of off-site physio, followed by a month break before my final one or two sessions to tie up any loose ends. Oh, I can’t wait!!! While I’ll likely still need to continue with at home physio, I’m really looking forward to getting my life back, and the end of formalized sessions will be a step in that direction!
How does one stay motivated to do all that physio, you ask? Well, let me tell you, it’s not easy! The first four months were great - I did nearly every single exercise religiously every single day. But by October, I was starting to feel a little challenged in the inspiration department! So, what I did was create an inspiration board with pictures of my favourite band & a photo of me with friends at one of said band’s shows. I rode my elliptical for an hour straight the other day with the inspiration board propped up in front of me, so I guess you could say it’s working! :)
All this hard work has really paid off, though. Gone are the crutches & walker, all the rental equipment/aides have been returned & I have lost 12 lbs since surgery without even trying! And although I still walk like a duck, I’ve come a LONG way in the past three months! I can even touch my toes with a bit of bending at the knees, the neuropathy & other nerve pains have improved (though they're not gone entirely) and to my delight, I can once again get down on the floor (very carefully, I might add!) to hang out with my beloved fur-babies! <3 My next goal is to one day be able to run without looking like a drunken weeble-wobble, in hopes of making it near the front at all those Placebo gigs I’ll be attending next year! Yes, a girl’s gotta have her priorities! It’s all about the music! And the Molko! Don’t forget the Molko! ;) <3
Speaking of which (music that is!), September saw me embark on my endeavour to reconnect with my musical brain, as I began taking part in Wellspring’s music programs for those touched by cancer. In particular, I started both the ukulele class & drumming circle I’d missed during summer, and I must say I’m really enjoying them! I have a whole new level of respect & admiration for anyone talented enough to play a stringed instrument & do it WELL! Drumming circle is my favourite, though, because it doesn’t matter about all the music theory I’ve forgotten over the years. Anyone can do it & you don’t have to fight with your fingers trying to get the hang of chords! You just lose yourself in the drums & it’s simply amazing! One thing we do each week is play specifically for two members of the circle, surrounding them as they lay down on chairs in the middle of the circle. As we play, we focus our energies on whatever they want the healing-focus on. For instance, it could be something as simple as finding peace or it could be something more serious such as chronic pain or a recurrence. I was brave enough to volunteer to go into the circle during my first time, and it was such a surreal feeling hearing the music move around me as the others walk around playing various percussion instruments! And the healing touch at the end was, well, a nice touch - and completely optional, I might add. :) Music has been found by scientists to have great healing power, and I believe it. Amongst other things, it reduces stress hormones & depression by creating a natural high with the production of dopamine, which also helps increase energy. It’s no wonder there are so many music programs at Wellspring. :)
Still on the topic of Wellspring, I also finally got to take part in that laughter yoga I’d been wanting to try for years! Although, I only did one session due to its early morning start-time, I highly recommend EVERYONE try it at least once in their lifetime! There’s actually a science behind it, as well. Around 1995, it was invented by a doctor in India who felt his cancer & stroke patients’ lives were just too stressful & in need of more joy. Thus, laughter yoga was born! But it’s not just all jokes & smiles. Laughing, whether real or fake, provides the body with increased oxygen, which boosts both energy & immunity. The instructor even went so far as to suggest that a body with increased oxygen is inhospitable to cancer cells, so there just might be something to that old adage, “laughter is the best medicine”!
[NOTE: Post title inspired by the bonus track "Pity Party (of One)" by Placebo from their 2013 album "Loud Like Love"]
Thursday 30 July 2015
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
*[NOTE - The title of this post is loosely inspired by Placebo's song "Meds" from their album of the same name, released in 2006.]
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.]
Tuesday 7 July 2015
Babble, Babble, Bitch, Bitch...Stupid Alien, Can't Wait Till You're Gone!!!
07/07/15 - Had my pre-surgery telephone consultation with a nurse this morning. She told me to bring copies of my personal directive & power of attorney docs to surgery on Friday. Wow, I know that's probably standard procedure with major cancer surgery like this, but that sure threw me for a loop! I've had major surgery several times & not once have I been asked to bring that kind of thing before. Mind you, it's been 10 years since my last major surgery, so perhaps that's something they do now with everyone...
And tomorrow I have to go across town to see the anesthesiologist, which I'm rather annoyed about, because I'd signed up for laughter yoga at Wellspring but I can't do both, so I have to cancel. I was really looking forward to it, too, as I've always wanted to try it since seeing it on the news a number of years ago. Oh well, hopefully, they'll have another session of it in the fall when I'll be well into my recovery.
*[NOTE: Post title inspired by lyrics from Marilyn Manson's song "This is the New Shit" off their 2003 album, "Golden Age of the Grotesque".]
Monday 6 July 2015
Pre-Surgery Consultation
07/06/15 - Quick update. Please forgive my lack of finesse in writing today. Got less than four hours sleep, as the anxiety of everything is starting to creep up on me, but here goes… Saw my oncologist today for my pre-surgery appointment. Everything’s on track. The bug bite from hell, though slowly healing (my foot’s still more swollen than usual), won’t have any impact on my surgery. He’s also not worried about all those nodules that came up, because everyone has nodules throughout their body whether they have cancer or not, so they’ll watch them & if any get beyond a certain size, they’ll take further action. Re: my concerns about the >25% round-cell component, he says that it does NOT change my current treatment plan, so he is not overly concerned about it at this point.
As for surgery itself, surprisingly, it’s only going to take two hours & he aims to remove my tumour (aka “the alien”) in one piece, which will reduce the chance of it spreading. I’ll be in hospital for about a week, possibly even less - yes, LESS! I juste hope they don’t try to push me out of there prematurely just to free up a bed. They’ll also do toxicology reports at the time, which will take two weeks to come back, if memory serves right.
I will have some physio in hospital, but considering I’ll have stitches still healing, not sure how much that’ll entail, aside from wobbling & hobbling around very slowly! Oh, and thank god, there’s no requirement for a skin graft, which is a relief. He’s expecting my recovery time to be about three months, so hopefully I’ll be done before my short-term disability runs out, cause otherwise I’ll be in for a substantial income drop if I have to go onto long-term disability. So, that’s pretty much it. I have a pre-surgery preparation appointment via phone tomorrow morning, as well, and on Thursday I have to call for my surgery time. I, of course, forgot to ask my oncologist several other questions, despite writing numerous questions down! But it doesn’t really help when you forget to write the question down in the first place! :p Damn it, I’m so tired right now, I forget the questions I forgot! :p Can’t even come up with a Placebo lyric to go along with this post! :( Zzzzzzz...
Thursday 2 July 2015
Thankful Thursday
07/02/15 - For ages, I’ve been wanting to do one of these Thankful Thursday lists but just never got around to it! But with surgery being eight days away & an explanation of my recent scan results just four days away, it’s now or never, because next week’s going to be insane & I’ll probably be a basket case come next Thursday! So, here goes…twelve things I’m thankful for. :)
1. My mom & auntie - for being my rocks & the best family I could ever ask for.
2. My little dorklets, aka my dogs - for all their unconditional love, cuddles & companionship over the years & for letting me take a million photos of them, unlike a certain other cutie pie who shall remain nameless! ;) <3
3. My close friends, near & far - for embracing & I’m sure sometimes enduring all my little quirks & sticking around when the goinggot…is…tough, for making me laugh & keeping me sane…for giving me space to hermit when needed…but then dragging me out from under my rock from time to time.
4. Medical benefits - I may not have a job anymore but at least they let me keep the benefits for a bit longer!
5. Wellspring - for giving me a place to go...
6. Placebo - For being the mirror to my soul & one beautiful distraction! C’mon, did you REALLY think I could do a list without mentioning them somewhere?! :p
7. This amazing weather we’ve been blessed with this summer & this past spring & winter. I don’t know what I’d do if all of this had happened in the dead of a winter from hell! I think they’d have to cart me off to an institution somewhere!
8. Off! bug spray! Needs no explanation! :p
9. My house - If push comes to shove & I have trouble finding work once I’ve recovered from surgery, I can sell it if necessary. Hopefully, it doesn’t come down to that, but it could prove to be a bit of a safety net.
10. Hope - I’ve read so many stories of others in the same boat who have none. So grateful to at least have that luxury.
11. My smartphone! It may be slower than a turtle these days, but it’ll be my lifeline over the coming weeks!
12. Internet - see above line re: cell phone! :p
1. My mom & auntie - for being my rocks & the best family I could ever ask for.
2. My little dorklets, aka my dogs - for all their unconditional love, cuddles & companionship over the years & for letting me take a million photos of them, unlike a certain other cutie pie who shall remain nameless! ;) <3
3. My close friends, near & far - for embracing & I’m sure sometimes enduring all my little quirks & sticking around when the going
4. Medical benefits - I may not have a job anymore but at least they let me keep the benefits for a bit longer!
5. Wellspring - for giving me a place to go...
6. Placebo - For being the mirror to my soul & one beautiful distraction! C’mon, did you REALLY think I could do a list without mentioning them somewhere?! :p
7. This amazing weather we’ve been blessed with this summer & this past spring & winter. I don’t know what I’d do if all of this had happened in the dead of a winter from hell! I think they’d have to cart me off to an institution somewhere!
8. Off! bug spray! Needs no explanation! :p
9. My house - If push comes to shove & I have trouble finding work once I’ve recovered from surgery, I can sell it if necessary. Hopefully, it doesn’t come down to that, but it could prove to be a bit of a safety net.
10. Hope - I’ve read so many stories of others in the same boat who have none. So grateful to at least have that luxury.
11. My smartphone! It may be slower than a turtle these days, but it’ll be my lifeline over the coming weeks!
12. Internet - see above line re: cell phone! :p
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!
"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
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.]
Friday 12 June 2015
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".]
Monday 11 May 2015
Ticket for the Train - Anywhere But Here!
05/11/15 - Wow, packing for 3.5 days in hospital is almost as nuts as packing for one of my Placebo treks! Just substitute the concert tickets, t-shirts, boots & excitement with a meds list, nighties, slippers & anxiety! :p I even have my obligatory tech for killing time, plus I'm STILL up packing & doing laundry at stupid o'clock JUST like one of my road trips! Now if only one of the nurses looked like Brian Molko, I'd be all set! ;) Wish me luck! 3.5 days of overnight 24 hour chemo, followed by the first two of 10 radiation sessions this week. Someone give me a time machine, so I can travel back to March & relive my last roadtrip instead!!!
*[NOTE : Post title inspired by lyrics from the song "Julien" by Placebo off their 2009 album Battle for the Sun.]
Thursday 7 May 2015
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.]
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.]
Monday 4 May 2015
Hang on to Your I.V. - Chemo & Radiation Starting Very Soon!
05/04/15 - After a month of waiting & several "tentative" start dates, I *finally* got CONFIRMATION of my chemo & radiation start dates beginning a week from today! Not sure excited is the right word - more like apprehension & fear of the side effects, but I feel relieved nonetheless to at last have some concrete dates, so that treatment can finally begin & I can move FORWARD in trying to beat the evil alien in my leg!
Everyone reacts to chemo & radiation differently, so I decided to post a bit of the info provided by my doctor's office ahead of time while I am still feeling relatively well. So, here goes...
My chemo will be administered by PICC (peripherally inserted central-venous catheter), which is a soft long catheter that's inserted into an arm vein while its tip rests in a large vein near the heart. A PICC can safely remain in your vein for days, weeks or even months, although I believe they're only leaving it in for the three days & nights of "chemo-light" I'll be having. Again, for those who're just tuning in to this blog, they're only doing a small dose of chemo in my case, in order to accustom my body for the upcoming radiation treatment. They say they get better results with less side effects, as fewer radiation treatments will be required doing it this way, in conjunction with doing the chemo & radiation prior to surgery. But getting back to the subject of PICCs...
Why is a PICC used? PICCs are used to administer:
- IV fluids
- medication
- blood products
- chemotherapy
- special nutrition
Once the PICC is inserted, they'll perform an x-ray to ensure the end near my heart is in the correct position. Only once that's complete will they start the chemo.
So, I'll have chemo overnight for three days in a row, then out-patient radiation begins the same day chemo ends for 10 days.
The hospital has some classes re: radiation therapy orientation I'm going to try to attend this week. I forgot to ask if there's also a chemo class. I'll be sure to report back on those should I attend either. Meanwhile, I'd been hoping to attend some local support programs re: meditation, drumming & just hanging out with other cancer patients, but the organization requires you to become a member first, which can NOT be done online, so stay tuned on that one! Crossing fingers I'll get my fax working that I haven't used in years! :p
*[NOTE: The title of this post was inspired by Placebo's song "Hang on to Your IQ" from their self-titled debut album.]
Everyone reacts to chemo & radiation differently, so I decided to post a bit of the info provided by my doctor's office ahead of time while I am still feeling relatively well. So, here goes...
My chemo will be administered by PICC (peripherally inserted central-venous catheter), which is a soft long catheter that's inserted into an arm vein while its tip rests in a large vein near the heart. A PICC can safely remain in your vein for days, weeks or even months, although I believe they're only leaving it in for the three days & nights of "chemo-light" I'll be having. Again, for those who're just tuning in to this blog, they're only doing a small dose of chemo in my case, in order to accustom my body for the upcoming radiation treatment. They say they get better results with less side effects, as fewer radiation treatments will be required doing it this way, in conjunction with doing the chemo & radiation prior to surgery. But getting back to the subject of PICCs...
Why is a PICC used? PICCs are used to administer:
- IV fluids
- medication
- blood products
- chemotherapy
- special nutrition
Once the PICC is inserted, they'll perform an x-ray to ensure the end near my heart is in the correct position. Only once that's complete will they start the chemo.
So, I'll have chemo overnight for three days in a row, then out-patient radiation begins the same day chemo ends for 10 days.
The hospital has some classes re: radiation therapy orientation I'm going to try to attend this week. I forgot to ask if there's also a chemo class. I'll be sure to report back on those should I attend either. Meanwhile, I'd been hoping to attend some local support programs re: meditation, drumming & just hanging out with other cancer patients, but the organization requires you to become a member first, which can NOT be done online, so stay tuned on that one! Crossing fingers I'll get my fax working that I haven't used in years! :p
*[NOTE: The title of this post was inspired by Placebo's song "Hang on to Your IQ" from their self-titled debut album.]
Tuesday 28 April 2015
Pictures
04/27/15 - My radiation CT scan & planning (see lower right photo below) were completed in half the time anticipated, only took an hour! :) It was relatively painless, apart from the horribly hard medical table I had to lay on (Oh, my poor spine!). They had this beanbag mould thing filled with air that they used to build the mould that will keep me still during radiation treatment. Once they found a position that worked for them, they'd release the air & the mould would harden around my legs. If they needed to make an adjustment, they just filled it up with air again! So cool! Also, the giant digital photo frame on the ceiling showing blue sky & tree branches was a really nice touch. :) I want one! ;) In addition to this, they drew lines on my leg & placed tape in certain places, which will ensure they place my legs in exactly the same position during each radiation session. Still waiting for official confirmation of the chemo & radiation start dates. Tentatively, they commence next week, but I'll believe that when I see it, since one staff member today suggested it could be another two weeks before they start! Arrrggghhh!!! So frustrating! I feel like my leg is a ticking time bomb! I just want them to get this treatment started before Sir Alien decides to freakin' migrate somewhere else!
In addition to the radiation planning, the pics below show a lot of the past month, including pics of several of the tests. Speaking of which, one more test tomorrow - ultrasound on my ovary. Crossing every appendage possible it turns out to be nothing to worry about!
Last but not least, I have to give a huge THANK YOU to the CCS's Volunteer Driver program!!! My driver was wonderful! She even waited while I was at my appointment, so that we could get going as soon as I was done!
Sorry if this post is rather all over the place. I'm exhausted!
In addition to the radiation planning, the pics below show a lot of the past month, including pics of several of the tests. Speaking of which, one more test tomorrow - ultrasound on my ovary. Crossing every appendage possible it turns out to be nothing to worry about!
Last but not least, I have to give a huge THANK YOU to the CCS's Volunteer Driver program!!! My driver was wonderful! She even waited while I was at my appointment, so that we could get going as soon as I was done!
Sorry if this post is rather all over the place. I'm exhausted!
*[NOTE: The title of this post was inspired by the song "Pictures" written by Brian Molko.
Saturday 25 April 2015
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.]
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.]
Tuesday 21 April 2015
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".]
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".]
Saturday 18 April 2015
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".]
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".]
Wednesday 15 April 2015
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".]
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.
Sunday 12 April 2015
"It's in Your Family Tree..." - Is There a Genetic Connection?
04/12/15 - Well, it appears the doctor wasn't just humouring me after all when he said there wasn't anything I could've done to prevent this. After five days of putting it off, I finally got around to Googling "myxoid liposarcoma". Whoever told me it was rare wasn't kidding. To my surprise, I had to dig a bit through the Google results to find the info I was seeking. However, I did manage to come across this, once again from the Sarcoma Help website (http://sarcomahelp.org/liposarcoma.html):
"Perhaps the best characterized genetic association is that found with myxoid liposarcoma. This represents a translocation, or sharing of genetic material between two chromosomes. In myxoid liposarcoma, the translocation is between chromosome 12 and 16. The result is a gene called TLS-CHOP which is an oncogene, or gene that when expressed can lead to the formation of cancer. This particular translocation and its products are found only in myxoid liposarcoma and therefore are diagnostic of this tumor (Rubin 1997)."
So, if I understand this correctly, basically, it's in my DNA, which seems to make sense, since my grandpa had a type of sarcoma at 85 in his elbow. His may have been a different subtype, though, as those with myxoid liposarcomas tend to get them between 40-60 years of age in their thigh. Still, it's nice to see evidence of this genetic link in writing, because despite what everyone's been telling me, if I'm honest, I never did stop blaming myself, even after the doctor told me it wasn't my fault.
***[EDIT/CORRECTION - 04/21/15]*** After finally getting my second consultation, I discovered what the above quote is referring to are just genetic markers to help identify WHAT variant of cancer doctors are dealing with! THERE IS NO KNOWN GENETIC component to myxoid liposarcoma! In fact, according to the Sarcoma Alliance website, scientists are still trying to figure out what causes sarcomas!
Another interesting thing I stumbled upon in the above mentioned article is that myxoid sarcomas have a misleadingly benign appearance, thus explaining why my family doctor initially agreed that it SEEMED to appear benign but that more tests & a specialist were needed to be sure.
Ugh, and now I know why I put off reading Google...once again courtesy of: http://sarcomahelp.org/liposarcoma.html:
"There are four types of liposarcoma, each with its own unique characteristics and behaviours.
1. Well-differentiated liposarcoma is the most common subtype and usually starts as a low grade tumor. Low grade tumor cells look much like normal fat cells under the microscope and tend to grow and change slowly.
2. Myxoid liposarcoma is an intermediate to high grade tumor. Its cells look less normal under the microscope and may have a high grade component.
3. Pleomorphic liposarcoma is the rarest subtype and is a high grade tumor with cells that look very different from normal cells.
4. Dedifferentiated liposarcoma occurs when a low grade tumor changes, and the newer cells in the tumor are high grade.
The risk of recurrence and metastasis with liposarcoma increases with higher grade."
So, once again, if I'm understanding this correctly, myxoid liposarcomas have a tendency to have a medium to higher grade, and thus a greater chance of spreading. Greeeaaat. I think I'll stop reading now! Ignorance is bliss. Sticks fingers in ears & covers eyes...lalalalaaaaa!!!
[EDIT - 04/19/15] - After reading some more of the material at sarcoma help.org, it seems there are two variants of myxoid liposarcoma. While myxoid liposarcoma can be intermediate in grade, there is a higher grade sub-type variant known as myxoid-round cell liposarcoma. I have no idea which variant I have but will know once I have my second consultation.
I also did some reading on the five & ten year survival rates, and they seem promising, assuming of course the cancer hasn't spread. At the five-year point it's 88%, and it's 76% at the ten-year mark. This makes me feel a lot better. Now let's just cross every appendage possible it hasn't spread...
*[NOTE: The title of this post was yet again inspired by a lyric within Placebo's "Post Blue" track from their "Meds" album. :) ]
"Perhaps the best characterized genetic association is that found with myxoid liposarcoma. This represents a translocation, or sharing of genetic material between two chromosomes. In myxoid liposarcoma, the translocation is between chromosome 12 and 16. The result is a gene called TLS-CHOP which is an oncogene, or gene that when expressed can lead to the formation of cancer. This particular translocation and its products are found only in myxoid liposarcoma and therefore are diagnostic of this tumor (Rubin 1997)."
So, if I understand this correctly, basically, it's in my DNA, which seems to make sense, since my grandpa had a type of sarcoma at 85 in his elbow. His may have been a different subtype, though, as those with myxoid liposarcomas tend to get them between 40-60 years of age in their thigh. Still, it's nice to see evidence of this genetic link in writing, because despite what everyone's been telling me, if I'm honest, I never did stop blaming myself, even after the doctor told me it wasn't my fault.
***[EDIT/CORRECTION - 04/21/15]*** After finally getting my second consultation, I discovered what the above quote is referring to are just genetic markers to help identify WHAT variant of cancer doctors are dealing with! THERE IS NO KNOWN GENETIC component to myxoid liposarcoma! In fact, according to the Sarcoma Alliance website, scientists are still trying to figure out what causes sarcomas!
Another interesting thing I stumbled upon in the above mentioned article is that myxoid sarcomas have a misleadingly benign appearance, thus explaining why my family doctor initially agreed that it SEEMED to appear benign but that more tests & a specialist were needed to be sure.
Ugh, and now I know why I put off reading Google...once again courtesy of: http://sarcomahelp.org/liposarcoma.html:
"There are four types of liposarcoma, each with its own unique characteristics and behaviours.
1. Well-differentiated liposarcoma is the most common subtype and usually starts as a low grade tumor. Low grade tumor cells look much like normal fat cells under the microscope and tend to grow and change slowly.
2. Myxoid liposarcoma is an intermediate to high grade tumor. Its cells look less normal under the microscope and may have a high grade component.
3. Pleomorphic liposarcoma is the rarest subtype and is a high grade tumor with cells that look very different from normal cells.
4. Dedifferentiated liposarcoma occurs when a low grade tumor changes, and the newer cells in the tumor are high grade.
The risk of recurrence and metastasis with liposarcoma increases with higher grade."
So, once again, if I'm understanding this correctly, myxoid liposarcomas have a tendency to have a medium to higher grade, and thus a greater chance of spreading. Greeeaaat. I think I'll stop reading now! Ignorance is bliss. Sticks fingers in ears & covers eyes...lalalalaaaaa!!!
[EDIT - 04/19/15] - After reading some more of the material at sarcoma help.org, it seems there are two variants of myxoid liposarcoma. While myxoid liposarcoma can be intermediate in grade, there is a higher grade sub-type variant known as myxoid-round cell liposarcoma. I have no idea which variant I have but will know once I have my second consultation.
I also did some reading on the five & ten year survival rates, and they seem promising, assuming of course the cancer hasn't spread. At the five-year point it's 88%, and it's 76% at the ten-year mark. This makes me feel a lot better. Now let's just cross every appendage possible it hasn't spread...
*[NOTE: The title of this post was yet again inspired by a lyric within Placebo's "Post Blue" track from their "Meds" album. :) ]
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