Three Years Ago Today...

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)! :) 

#SarcomaSurvivor, #SarcomaAwareness, #LifeIsWhatYouMakeIt, #Placebo30

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THIS MESSAGE COULD SAVE YOUR LIFE!

02/09/17 - If you or someone you know notice a firm swelling or mass in your leg, get it checked out just to be on the safe side. It could save your life. Two years ago today, my life changed forever when my mom was finally able to see the 25 x 13 x 8.7 cm mass in my posterior left thigh. I spent nine hours in emergency two days later while they were checking to see if it was a blood clot, but [insert Arnold Schwarzenegger voice here] it was a high-grade malignant tumour! Can't believe it's been two years already!  Sarcomas are often discovered only once they become quite large, as they exhibit little to no pain so I can not stress enough, if you feel like something isn't right, GET IT CHECKED OUT! 80% to 90% of myxoid round cell liposarcoma recurrences & distant metastasis happen within three years of surgery. Case in point, our small group of lumpy alumni recently lost two MRCLS survivors over the past two months, so i'm feeling very relieved, not to mention grateful, to have reached the halfway point as of last month! 😌🎗🙏🏼

Many doctors are not familiar with sarcomas & some never even see a case in their entire lifetime. Because of this, sarcomas are often misdiagnosed as lipomas & removed by non-sarcoma specialists (even by well-meaning oncologists who have no experience with sarcomas), resulting in numerous complications, extra surgeries & increased rates of metastasis. So, if you've been diagnosed with a lipoma, get a second opinion, preferably from a sarcoma centre. It may be nothing, but better safe than sorry!

On a side note, I'm starting to feel a bit better about my current surveillance schedule, which has been less frequent when compared to my American counterparts. This article, "Followup in Soft Tissue Sarcomas", presents a European perspective on sarcoma surveillance, which pretty much mirrors everything my oncologist has been telling me for the past two years. As many of the online support groups are very US-centric, I have really struggled with the less frequent scans offered by our public healthcare system. So, if you're outside the US & also having to deal with the fiscal constraints of a public healthcare system, you'll want to check out the above mentioned study. :)


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MSKCC Liposarcoma Survival Nomogram Update & Clarification

02/06/17 - Great news!  The sarcoma team over at Memorial Sloan-Kettering Cancer Centre in the US has finally updated their liposarcoma survival nomogram with a very clear definition of tumour burden, in particular what dimension to enter if you only had one initial tumour.  There was a bit of confusion over on the Liposarcoma Survivors FB group as to how best to enter the data for this, so this clarification is much appreciated! :)   As a result of this clarification, it has improved my projected outlook a bit for both the five & twelve-year disease specific survival rates to 74% & 55% respectively. :) The only time you need to add up the largest tumour dimensions is if you had more than one tumour at the time of diagnosis, so if you only had one initial tumour & entered the two largest dimensions of that one tumour, you'll want to re-enter your data for a more accurate result.  Oddly enough, my oncologist originally agreed with the five-year estimate using the two largest dimensions of my one tumour, but hey, if MSK is now saying just use the one largest dimension, I'll more than happily take it!  :)


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#WorldCancerDay

02/04/17 - Today, February 4th, 2017, is #WorldCancerDay. This day is near & dear to my heart, because not only am I a recent high grade cancer survivor, my grandpa is a two-time cancer survivor, my grandma, great grandma, first love, best friend's mom & a coworker all died of cancer. So, for me, it's personal.

Each year 12.7 million people around the world discover they have cancer. 7.6 million people die of cancer each year worldwide. In 2016, it was estimated that there would be 202,400 new cases of cancer and 78,800 deaths from cancer in Canada during that year alone. Broken down further, on average, 539 Canadians are diagnosed with cancer each day and 214 Canadians die daily of cancer. Cancer is the leading cause of death in Canada and is responsible for 30% of all deaths.

Although survival rates for all cancers combined at the five-year mark are 60%, only one third of cancer cases can be "cured" if caught early enough, leaving the remaining two thirds to face metastasis, recurrence or distant metastasis. The five-year disease specific survival rate (i.e. not dying from the disease) for lung cancer is 17%, whereas prostate cancer and breast cancer are 95% and 87% respectively. For soft tissue sarcomas (of which there are 50-70 subtypes, including liposarcoma), the five-year survival rate is 56%. With extremity round cell myxoid liposarcoma (the kind that I had), the five year survival rate is estimated to be 60% (as confirmed by my oncologist and several liposarcoma nomograms but estimates range from 57% to 74% depending on which study you read...#ChallengesOfHavingARareCancer). It drops down to 50% at the 10 year mark, whereas in contrast, the 10 year survival rate is 83% for breast cancer and 98% for prostate cancer if non-metastatic at the time of first diagnosis.

Over the past few years, deaths from cancer across Canada have gone down, but there's still a long way to go. Here's hoping that one day there will be a cure for ALL cancers, not just the more common ones but the rare ones, as well.

References:
www.cancer.ca
www.cancer.net
www.cancer.org
www.mskcc.org/nomograms/sarcoma
www.sarculator.com
www.sarcomahelp.org


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Don't Believe Everything You Think!

10/28/16 - After a not so mini-freakout earlier today when the emailing of my scan results was delayed, I finally received them late this afternoon. I was convinced the delay was because the results were bad & they didn't want me to know before my appointment in three days. Originally, I was going to wait till Sunday night to read them, so that if anything was concerning, I'd hopefully only lose just one night of sleep till meeting with my oncologist on Monday. But after 24 hours of increasingly worrying, my gut told me to just get it over & done with!

Great news!!! NED appears to live once again! NED = “no evidence of disease”, so unless they find something weird in my thigh which they haven’t scanned since January, I seem to be all clear!!!

I do, however, have a new ovarian cyst with thin internal septation on my left ovary (the cyst has divided in two within itself is my understanding of that) & I still have two right ovarian cysts that are stable. They're also continuing to monitor the sclerotic focus on the T3 in my spine & the nodule in my thyroid, which is 2mm bigger than the last measurement I remember but they are not concerned about it, as measurements can vary a bit from test to test & technician to technician. They once again noted the multi-level degenerative changes in my thoracic & lumbar spine, so I must remember to ask if that could be what’s causing inflammation near my sciatic nerve... Last but not least, chest & abdomen are all clear. YAY!!!

Now let's just hope the examination of my thigh is ok on Monday, but I think it will be. :) Soon relieved, if all goes well, I will have graduated to 16 months NED! :) :) :) It's been quite awhile, though, since my last MRI, so here's hoping he'll finally order a new one. I have since spoken to three other sarcoma specialists through an online group we have to connect patients & survivors with sarcoma specialists, and they all recommend MRI's every three to six months. Nearly TEN months have gone by since my last MRI.

As for my earlier panic attack! My brain goes extra nuts the week before scan results, so when I didn't hear anything, I put two & two together & made five! Need to take my own advice from a post I sent elsewhere yesterday, LOL! :p Extremely relieved doesn't even begin to describe how I feel right now! Time for some long awaited touring FUN! Culture Club & Placebo, here I come! <3

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Breathe...Believe!

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.]


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First Anniversary Cancer Free! :)

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


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Sarcoma Connection Canada - a New Sarcoma Support Group!!! ;)

06/11/16 - If you know of anyone battling sarcoma, please let them know, there is a new Facebook group for those in Canada who've either battled it or who are currently battling it. Although there are several other groups on FB re: various types of sarcomas, including the one that I battled, they're all very US-centric. Tis past week, the second annual International Sarcoma Symposium was held in Toronto, and the idea of having a Canadian based group was brought up & thus the group was born. :)

Sarcoma Connection Canada Facebook Support Group

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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