07/10/18 - Exactly three years ago today, I had a 25x13x8.7cm round cell/myxoid liposarcoma (MRCLS) cancer tumour removed from my left thigh. Besides leaving a 10” scar, sarcoma forever changes you in ways the eye can’t see. Like many life altering events, there is life before sarcoma & life after. We have a saying in the sarcoma community, sarcoma is a marathon, not a sprint. Over the past three years, there have been times where I wondered if I would ever get to this crucial point. With sarcomas being so rare & many survivors never having met another person with the same sarcoma subtype, the online sarcoma community has become very close knit. Since my diagnosis, several fellow survivors whose journey started out quite like mine have lost the battle due to their MRCLS returning with a vengeance, which makes me all the more grateful to reach three years with NED (no evidence of disease). I still have to be monitored for life, as sarcoma can return many years later (i.e., 7, 8 & even 11 years in some cases), but I take comfort in the fact that many cases of mets (metastasis) occur in the first three years for my subtype, so three years is a huge milestone.
So much has happened since my diagnosis. While in the middle of cancer treatment, I was laid off my job of nearly two decades, which was a bit of a mixed blessing, as it gave me time to heal & process everything. While 2015 was spent recovering physically, 2016 was spent recovering emotionally. Still, the winds of change continued over the past year with the relief & challenge of finally finding a new job, and the heartbreak of losing my two older dogs who passed away five months apart. Throughout all this, some bonds have strengthened while others have been broken. But with mom, my youngest remaining dog & good friends by my side, both new & old, I have come through. :)
To be honest, for the past three years, I have in many ways been waiting for the other shoe to drop, but I refuse to do that anymore. Sure, it’s always at the back of my mind that it could return when I least expect it (there is no blood test & often no symptoms with sarcoma), but something changed in me this year. I don’t know if it was witnessing the passing of my two older fur-babies or just the process of time, but I've decided that life is for the living, so I am going to move forward until the universe decides otherwise. Deciding to get another dog was the first step towards this, and I am so excited to have Molko join our little family later this summer! During the months following my diagnosis, Placebo’s music was the only thing that could take my mind away from it all & give me some kind of peace, so what better way to honour that than by naming my newest fur-baby after the singer whose lyrics mirror my soul. Placebo was also the soundtrack to my five months of physio that followed, when my sole purpose in life was to recover well enough to make it to their 20th anniversary tour! Well, I guess you could say I succeeded & then some, as I just came back from my third trip this tour, three weeks before my third NED anniversary. Seeing my favourite band in a historic city with amazing friends, it doesn’t get much better than that! :)
Next big milestone: 10 years! Better start saving my travel points now! ;) Meanwhile, I'm just happy to graduate to six-month scans (previously every four months)! :)
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01/23/17 - Something strange happened the week preceding my last MRI scan. Finally, after a year & a half of much debate & stress over how often my MRI’s should be scheduled, I found myself feeling surprisingly relaxed, whereas normally a healthy dose of “scanxiety” would kick in. Perhaps it was due to the fact I’d just returned from my fangirl trip of a lifetime, or perhaps it was due to the fact I’d been sick for nearly two months & was simply ecstatic to finally be over what I now believe was the RSV virus (a severe respiratory infection, often mistaken for a heavy cold). Whatever the reason, for the first time in the year & a half since this medical rollercoaster began, I just felt calm. Could it be that I am finally getting the hang of this being a cancer survivor thing? Even when I learned receipt of my results would be delayed due to the absence of my oncologist’s administrative assistant, I wasn’t phased. My realistic self rationalized, if there was a problem, they would’ve had somebody else call me into the sarcoma clinic, so surely they must be fine. Right? Right! I hope…
Well, that was all three weeks ago, and alas, it was a good run while it lasted, but now that the assistant is back at work today, I can feel this doubts creeping in ever so slightly, although much less than with previous scans. I don’t think it’ll ever go away completely if I’m honest, but it’s been nice having that peace of mind.
Meanwhile, my fangirl trip of a lifetime was everything I’d dreamed & more! The trip was to see my favourite band Placebo for their 20th anniversary tour all over the UK & Ireland, but for me it meant so much more. Not only have I been a fan of the band for 20 years, there were times during my battle with sarcoma when the only time I felt true comfort was while lost in the music of Placebo. Even once I progressed to five months of physiotherapy, Placebo was my soundtrack every wobble along the way. In fact, I still have my Placebo inspiration board up on my elliptical. In addition to photos of the band from past shows, it also includes a marquee of the band’s name in lights & a photo of me with friends on the barrier at…you guessed it…another Placebo concert! Long story short, they were instrumental in getting me through one of the most difficult times of my life. Now not only have I come out the other side, but I made it through the trip that meant so very much to me, and I even got my second chance to meet the man who is positively my most favourite human ever to grace a stage. As if that wasn’t fantastic enough, he actually remembered me from when we’d met two years earlier, and he remember where I’m from! Needless to say, I was & still am on cloud nine, and ready to deal with whatever life throws at me.
Now here I am in 2017 still looking for my next big break on the hamster wheel, praying for “NED” (no evidence of disease), and a little uncertain of the future as a result, BUT I am here I made it! I don’t know what the future holds, but I’ve learned I'm a lot stronger than I ever could’ve thought.
So, now I’m off to bed to try to get some sleep. Hopefully, I’ll wake up to good news!
01/24/17 - Well, yesterday has come & gone, and the waiting continues…. Waiting, waiting, waiting…always waiting! *Deep breath*. *Looks down at the Placebo lyrics etched in my skin*…”Breathe, breathe…Believe, believe…"
*NOTE: Title inspired by a line from Placebo's song "Every You Every Me" from Placebo's 1998 album "Without You I'm Nothing". Thanks for reading! :) If you enjoyed this post, please help spread #SarcomaAwareness by sharing it on Google+, Twitter or Facebook using the buttons below. You can also subscribe to this blog using the links on the left.
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09/25/16 - It's been an eventful week! It started off with great news! Got the results of my shoulder scans, and it turns out I have tendonosis, which is similar to tendonitis but there's less inflammation & it's chronic. Why on earth are you happy about that, you ask? Well, at least it's not a liposarcoma recurrence! I've actually run across some fellow survivors whose recurrence was misdiagnosed as tendonitis or tendonosis, so I am very relieved to say the least! :) Even though I figured it was probably something like tendonitis, there was a part of me that was afraid it was something much worse. Tendonosis may suck, but at least it's not going to kill me! :) And it's slowly getting better, which my doctor says is normal as some cases can take several months to heal. Meanwhile, I have one more batch of tests next month for my usual surveillance before my trip for Placebo's 20th anniversary tour! Here's hoping my lucky streak continues & I make it to 16 months NED (no evidence of disease)! I can't wait to get out of here for a good while!
On Wednesday, I finally got my sarcoma ribbons! Yes, you read that right, ribbons in the plural! I ended up getting not one but two tattoos, one with the yellow sarcoma awareness ribbon honoring survivors, warriors & the fallen & the other with the plum ribbon honouring caregivers. Originally, I intended to get these in July for my first anniversary of Bing in remission, but better late than never! :) Of course, I put my own personal spin on them to make them more personalized to me & am so pleased with how they turned out! My tattooist did a wonderful job of re-creating the vision in my mind's eye! Of course, I also managed to incorporate Placebo into the mix & included scripts inspired by some of Brian's lyrics. As a pair, the tattoos for me honour family both two & four-legged, friends both near & far & the music that has helped me get through life, especially the past year following my sarcoma cancer diagnosis. They also represent hope, strength & finding inner peace. I've also come to the conclusion that there are a LOT more nerves in the wrists than there are in the upper arms! Still, the pain from this latest batch of tatts doesn't even come close to last year's one foot drain from hell! It's all relative, y'know? ;)
Now I'm throwing caution to the wind & am getting two more done on top of the two I just got. When they're all complete, I'll be up to a total of six! The next batch will honour my furbabies, as well as a big one to honour Placebo's 20th anniversary tour! I'm both excited & nervous at the same time, since the anniversary one is going to be the most ambitious tattoo I've yet to get! It's going to take more than two hours to complete! The things we do for our body art & a love of music, LOL!
Speaking of body art, recently, the news aired a story about a woman who does tattoos to cover scars for cancer patients & others who have scars for various reasons. It almost sounds perfect, except for the fact that there's one part of my massive scar line that is SUPER sensitive, so much so that there is no way I could handle getting tattooed there, as it's even uncomfortable when I gently touch that area. Otherwise, it would've been perfect, since most of the scar line is completely numb with little to no feeling whatsoever. But no, I think I'll stick to torturing the other parts of my skin instead, thank you very much! :p
Interestingly, I waited 17 years between my first & second tattoos, and now all of a sudden I'm on a roll, getting tattoos left right & centre. According to my tattooist, this is apparently quite normal after someone has experienced a major life event, such as cancer. Suddenly, it just makes everything clear as to what's important & you lose that fear of "should I or shouldn't I do this or that?". "Live for today, hope for tomorrow" pretty much sums it up. As cancer survivors, particularly high grade cancer survivors, we just don't know how much time we have & it it'll come back. Of course, nobody truly knows how much time they have left, but it's exacerbated ten fold when you're a survivor. Having a 40-50% chance of distant metastasis or recurrence within five years & a 56% chance within 10 years gives you a whole new perspective on taking chances in life. Just to clarify, in case I haven't yet already, those 85% as of five-years survival rate stats I wrote about earlier on in my blog did not differentiate myxoid from myxoid round cell, the latter of which has a much higher rate of recurrence & poorer long term prognosis. So, to the family & friends possibly wondering "Why is she doing all this when she's still laid off work?", that's why. Put simply, I don't have the luxury of assuming I have the luxury of time.
Speaking of time, I've never been religious or very spiritual for that matter, but I'm really starting to believe everything happens for a reason & at the right time. Last week it was announced that my childhood favourite, Culture Club, whom I never got to see is going on tour, so after 33 years of waiting, I will finally get to see the original lineup live! Although I've seen George perform solo, I've yet to actually see all of Culture Club as a whole perform together in one room! Too say I am ecstatic is an understatement! Being laid off in the middle of cancer treatment has actually been a blessing in disguise, because it's given me time to do even more travelling than usual without the worry off it interfering with a job & vice versa - and to just ENJOY it. So, now I have two Culture Club shows plus a whole bunch of Placebo gigs to look forward to over the next few months! Life is good! I may not know what the future holds health or job-wise for that matter, but I am learning to just trust in the universe & that things will work out the way they're meant to. This hamster is going to enjoy her time away from the wheel for a bit longer!
How has being a cancer survivor changed your life perspective, and how did you mark your first anniversary of being in remission? Feel free to drop me a comment below!
[NOTE: Title inspired by lyrics from Placebo's "Loud Like Love", which can be found on their 2013 album of the same name.] Thanks for reading! :) If you enjoyed this post, please help spread #SarcomaAwareness by sharing it on Google+, Twitter or Facebook using the buttons below. You can also subscribe to this blog using the links on the left.
03/20/16 - I'm so happy! The one thing that kept me going through my battle with myxoid round cell liposarcoma is finally upon me! Or well, it will be in about eight months!!! Placebo’s 20th anniversary tour is finally a reality, and my friend & I got tickets for a number of shows this fall! *Squeeeeeee* There were times when I feared I wouldn’t be alive to see this day, but here I am!!! Now the waiting begins...again….eight…long…months…ugh!!! I still have two more consultations with my oncologist, as well as a crap load of tests to get through between now & then, as we monitor for distant metastasis. So, now I’m terrified something will go wrong between now & then! Just wish I could get on a plane tomorrow, but alas the tour doesn’t even start till October! :( There’s something to be said for the rather SHORT notice we got for gigs over the past few years! This waiting for almost a year for shows is going to drive me nuts! And so much for my oncologist "spreading out" all my tests over several months! In June, he's now booked a CT scan, ultrasound & bone scan! Plus I'm sure he'll order my x-ray in between there, as well, since we're staunchly monitoring for lung metastasis. I almost don't mind doing them all at once. When they're spread out, I end up stuck waiting for sometimes two months to see him after a test &/or have to get the receptionist to email me the results... That's all fine when the results are good news, but what if one day they're not & my appointment isn't for another two months?! I suppose if that ever happens, they'll obviously move the appointment... But yeah, cluster the tests. Radiation or not. :p
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03/07/16 - Oh my... After my earlier post, I decided I should make a long overdue appearance on the Liposarcoma Survivors Facebook group I belong to, and I stumbled upon this gem!
The Sarculator App - an iOS & Android app for predicting sarcoma survival rates at five & ten years! Now I truly have heard it all! There is an app for EVERYTHING, LOL!
It's intended only for physicians, but YOU KNOW any sarcoma patient or survivor who's also an information sponge will download it anyway! ;) Unlike the MSKCC nomogram my oncologist dismissed because it's based on only one treatment centre, this app is based on data from three treatment centres! I literally laughed out loud when I saw this! If only I'd checked the group the day before, I could've brought this into my oncologist as well! I have a feeling he would've said the same thing he did about the other nomogram, but still... I think I'll send him the link just for fun! ;)
Interestingly, the five-year survival rate results are identical to the MSKCC nomogram, but the 10-year survival rate is quite a bit higher in the app than the MSKCC's 12-year survival rate, which supports what my oncologist was saying about trusting the five-year results but being wary of the 12-year results.
The app also gives five & ten-year probability of distant mets, which the MSKCC nomogram doesn't specifically get into. We're discussing on the FB group whether or not one would want to know this kind of stuff. Some people would rather not know, while others have the same line of thinking as I do, and that it's useful for making some important long term decisions, but don't let it run your life. Take for example, saving for retirement. Before I had cancer, I was saving & planning like someone who had another 40-50 years to live & another 25-30 more years till retirement. Now, I know, there's a higher probability I'll have to retire sooner, etc... So, obviously, I'm going to be more cautious in how i plan for retirement. Another thought I had was about pets. I currently have several dogs. When the older ones pass on, I had originally planned on getting another one to keep the younger company. Now I may not do that, because they're the type of breed that lives a long time. If I draw the unlucky end of the straw, I want to make sure he can easily find a home if my family isn't able to have him for whatever reason. Much easier done with one dog rather than two or more.
Then again, I am a planner, and knowing the stats gives me some sort of comfort. Although I can't control what the future holds, I can control how I live my life & the decisions I make, an as they say, knowledge is power. Planning has allowed me to keep a roof over my head, despite being faced with cancer AND losing my job all in the same year, so it's worked for me so far! Better to be prepared than burying my head in the sand & pretending life is all ice-cream & lollipops!
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01/03/16 - When a song comes into your life precisely at the right moment, as if to mirror your soul...
Something's telling me I need more than just this one week in my pajamas. So, to my friends and loved ones, please don't take it personally if I turn down more than a few invitations over the next while. I need to take some time to myself to process, well...EVERYTHING..
I've read other survivors' talk about experiencing depression & anxiety after treatment & physio finally ends. I don't know if this is that or if my body, mind & soul just need to recover from the past 11 months. But whatever "this" is, it's more than me just wanting to crawl into my introverted shell. I feel like I've been in "fight mode" constantly for nearly a year now, so consider this my "time out".
12/31/15 - Well, it’s New Year’s Eve as I write this, and boy am I glad to see the back of 2015! When I spoke with a counsellor soon after diagnosis, she told me she often sees patients return towards the end of their treatment, and it’s only now that I’ve gained enough insight to understand why. The past few weeks have been an emotional roller coaster, as I cope with the anxiety & fears of a possible recurrence, wondering could this be my last Christmas & if this is just the calm before the storm. I realized the other day that I pretty much jumped straight from physiotherapy into socializing three times as much as I’d normally prefer out of fear. Fear that it’ll come back, and with a vengeance. Fear that funny little lump on my elbow that i never noticed before is an early sign of METS. Fear that little dry cough is also a sign of METS. Fear that I won’t be around in ten years.
Adding fuel to the fire, a fellow survivor found a research-based nomogram by the Memorial Sloan Kettering Cancer Centre that shows estimated survival rates specifically for liposarcoma patients, and it appears that resident physician (the one my oncologist initially had answer my many questions because he was strapped for time) may not have been as forthright about survival rates as one would expect. Remember, this is the resident who gave me my grade instead of my stage, plus she’s the one who told my mom & I she’d be right back but then never returned! So, needless to say, I don’t have a lot of faith in anything she’s told me. But back to the nomogram… It made me realize, I probably don’t have as much time left as I was originally lead to believe. I mean, I pretty much figured that anyway due to my high (>25%) round cell component, but it appears the survival rates for even those with as little as >5% round cells are reduced. And while the realist in me knows I could always die of something else, like a car or a plane crash, it’s still quite daunting realizing that if nothing else takes me out, the cancer most likely will, even if it’s years down the road. The chances of a recurrence or distant metastasis are fairly high. So, even though I’m clear now, it could be waiting in the wings & show up in my lungs a few years from now. I can deal with that, but I just want the truth out of my medical team. So, I definitely plan to show my oncologist the nomogram when I see him in March. I realize some people wouldn’t want to know, but being single without a spouse to fall back on, I need to know how I should prepare for the future. For instance, is retiring in 20-25 years even a realistic possibility, or should I be saving like someone in their 70’s who’s likely only got an average of 10-15 years left to live?
Another thing that’s knocked the wind out of my sails lately is “survivor’s guilt”. Last week there was a news story about a 22-year old woman that lost the love of her life a month earlier when he passed away suddenly of unknown causes. Meanwhile, she, herself, was dying of stage four osteosarcoma in her leg & her last wish was to make it long enough to be able to hold her yet unborn baby. Well, she made it, as her son was born Christmas day, but that baby will never know either of his parents. Yet here’s me with no children, other than the four-legged kind, and no significant other, yet here I sit cancer free. Don’t get me wrong, I am grateful, but what the hell is the universe thinking??? If I wasn’t an agnostic-atheist, I’d swear the angels got our paperwork mixed up! Fortunately, I was quick to reach out for support from the online liposarcoma group I belong to, and it appears I am not alone with this paradoxical range of emotions. This knowledge alone brings me comfort & takes the edge away from this whirlwind of ups & downs I’ve been feeling lately.
Offline, I've tried sharing a bit about these post-treatment emotions with a few close friends but it was obvious they just didn't get it. After all, how could they? Only those who’ve had cancer themselves can truly understand. It's for this reason, I’ve noticed myself starting to hold back with friends and family about how I’ve been feeling - quite the opposite to when I first began my journey. They have moved on now that I am cancer free, but for those of us who’ve faced cancer directly, “cancer free” is a bit of an oxymoron, because once it’s touched you, you’re never truly “free”. It’s always in the back of your mind, and there isn’t a day that goes by where you don’t think about it, even if it’s just briefly. If forever changes your views on life, for better or worse.
Speaking of holding back, I've decided to be more selective with whom I tell in person about my having had cancer. i have lost count of the number of times I’ve heard “Oh…BUT you look good!” after telling someone I’m a cancer survivor when they ask about my leg. I’m not a small girl, so although I lost weight due to stress & lack of appetite, I don’t look like the stereotype people have of what a cancer patient should be. On top of that, despite loosing a lot of hair, I never did go completely bald. It just looks like I got a major haircut. So, to anyone reading this who’s never had cancer themselves, please note that what we as past & present cancer patients hear when you tell us “Oh…BUT you look good...” is “Oh…you don’t LOOK like you had cancer!” Seriously people, stop & think before you open your mouth! :p On the other hand, I’ve met a few fellow survivors in the real world by being so open, so choosing to be less so is bit of a double edged sword...
Last but not least, the thought of returning to work…or in my case, looking for a new job for the first time in over a decade after being laid off sent my anxiety so sky high that I’ve decided to take one or two more months to truly relax before starting my job search. Sure, some people might think being on medical leave for eight months would be enough of a break, but it’s been anything but relaxing. So, I’ve decided to be good to myself & give myself this time to properly unwind. For one thing, doing so will help me to be more resilient once I do return to work, and it’s not like I’ll ever get this kind of free time again, unless well…you know, but then that will be anything but relaxing! So, the first week of 2016, I plan to spend in my pyjamas! :p Then I plan to continue my endeavours of learning the ukulele & lose myself in my e-books. I also want to work up to riding my elliptical for five hours a week. Right now I’m at three hours a week. I want to find that wonderful balance I once had between my introverted “me time” & hanging out with friends. I'd also like to do a bit of soul-searching as to what I want in my next job & employer. While I’ll likely end up in a similar line of work, I don’t want to just settle for the first thing that comes along. Life is too short to spend it working for a company that makes you miserable. Most importantly, I plan to enjoy this extra time with my fur-kids (my dogs), as one of them has a health condition which will eventually end his life.
Still, even once I do resume said job search, the job market right now in my province is pretty tight. To say we’re in a recession here would be an understatement. So, whether I like it or not, it could be quite a while before I manage to return to the workforce. This presents another challenge, as many other survivors I’ve chatted with online say returning to work really helped. But what if there’s no work to return to? I might look into volunteering in the spring or summer if something still hasn’t cropped up by then or those elusive tour dates I’ve been waiting for still aren’t announced, but for now…pyjamas! Yes, pyjamas! ; )
*[NOTE: Post title inspired by the Placebo songs "Come Undone" & "H.K. Farewell", which can be found on their "Battle for the Sun" & self-titled debut albums respectively.]
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"]
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 going got…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
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".]
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.]
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.
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.]
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".]
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".]
03/03/15 - Friday when I got the news about my "evil twin", I was just happy that it "seemed" benign & that I could still go on my trip (distractions, distractions, oh beautiful distractions!). Saturday was a day of processing, where I got everything out in this blog. Sunday, I started my first ever "bucket list". Until now, I never really had much use for them, as I've been very lucky to realize a lot of my goals & dreams. Now I'm starting to see the point. Some of the stuff on my list is quite ambitious (like going to Australia to see white sand!), and some of it's pretty simple (like dying my hair purple & getting my second & probably last tattoo, but as a certain singer/songwriter once sang "...it's the perfect place to start". Everyone should have a bucket list, no matter how big or small. Don't wait till you get news that turns your world upside down either! Luckily, I got a head-start on mine, before I really even created it, but there a few more things I'd like to tick off my list if I can...
*[NOTE: Post title inspired by lyrics from "Bright Lights" by Placebo, which can be found on their 6th studio album "Battle for the Sun".]
