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Thursday, 4 January 2018

2017: Surviving the Winds of Change

01/04/18 - 2017 has been filled with much change for me. While it began with great uncertainty & an ever intensifying job search with endless resume edits, workshops & cover letters, I also managed to squeeze some fun into the mix. Besides enjoying time with friends & family, I went on a few epic walks around several local parks & we enjoyed the hottest Summer we’ve had in nearly 100 years! It was also the nation’s 150th birthday, soI feel grateful to have been around to celebrate that!

In May, I began my first ever charity fundraiser in anticipation of my second remission anniversary from sarcoma cancer, raising 87.5% of my goal, thanks to the help of friends, family & CanadaHelps, despite many of them being out of work due to a major recession, which I’m happy to say is finally starting to lift!

The following month, I finally got the break I had been waiting for on the job front when I learned all my hard work on my crazy five-part job application submission was just the right amount of crazy to get me the position, which I started later in the summer. If I never see another resume or cover letter again, it’ll be too soon! Having been away from the workforce for 2.5 years due to my battle with liposarcoma cancer AND being laid off while in the middle of treatment, it was a huge adjustment returning to work, but it’s going well, and I even managed to get two commendations in my first two months! Not bad for this 40-something post-chemo survivor who was nearly 20 years younger the last time she started a new job!

Prior to returning to work, I got the all clear for my July scans! :) Although my spinal MRI did find I have mild scoliosis & spondylosis, at least it’s not bone mets, so I’ll take it! My good luck continued with my November chest x-ray also showing NED (no evidence of disease). *knock on wood*. Next batch of scans are the big ones - annual chest/abdomen/pelvic CT scan & MRI of my leg in February, 2018. I always get a little extra nervous for these two, since there’s always the chance that the CT scan could catch something the x-rays missed, plus with the MRI being annual, a lot can happen in a year. As everysarcoma survivor knows, you hope for the best but prepare for the worst.

Meanwhile, after swearing I would NEVER travel to London alone due to an unrelated disability making navigating new places a big challenge, a moment of sheer insanity took over with the announcement of back to back Placebo gigs at the famous Brixton Academy! But with a mix of absolute panic & elation, I took a leap of faith & bought tickets anyway in hopes I’d find a way for it to work out. And that it did, thanks to the village of international Placebo fans who banded together to help me get safely around London! This last “road trip” was also bitter sweet, as it was evident Brian’s chronic tonsillitis had reached a critical point. It was a miracle he managed to even finish the shows, but he did, and for that I am forever grateful. They even managed to create some very cool alternate melodies that his poor tonsils could work with, some of which I actually liked better than the originals. Such talented artists, they are! Placebo is now the band I've seen the most out of any other. Not bad for the girl who waited 13+ years for them to return to her hometown before taking matters into her own hands! I think I have more than made up for those 13 years! 😂 Their music was a major lifeline during my battle with sarcoma, so I feel very fortunate to have attended so many shows of their 20th anniversary tour. This was such a huge win for the bucket list. 

Adding to the year’s theme of chaos, I also had several major home repairs to contend with alongside the stress of returning to work, including major hail damage resulting in the replacement of ALL my home’s siding, a leaking washer, deck & fence painting…AND…after years of saying our summers aren’t long or hot enough to warrant an air conditioner, I finally caved out of necessity. Let’s just say heat-induced sleep deprivation & new job training are NOT a great combo, especially when your post-chemo memory isn’t what it once was.

Needless to say, my assistive technology reviews have taken a seat on the back burner, as I’ve just been too exhausted, stressed or both to do many this year. Despite this, to my shock & amazement, my subscribers have nearly doubled! I started the project a month after finishing five gruellingmonths of post-surgery physio just to see if I could do it despite the challenges of having a disability. Besides keeping me out of trouble while being out of work, it also helped keep my mind off of my cancer. I’ve debated whether or not to keep it going since I’m currently unable to give it the attention it deserves, but you just never know what’s around the corner, so I have decided to continue, even if it just means the occasional update.

Amidst all this, the winds of change grew even stronger as my oldest dog's health suddenly began to decline after YEARS of him always being the healthiest of my dogs. In November, he passed on to the Rainbow Bridge a few months after his 15th birthday & just weeks after my return from the UK. He was my first ever dog, so his loss hit me hard. In fact, losing him was harder than dealing with my own mortality during my battle with sarcoma, as he passed away somewhere between his favourite bed & my arms an hour before the house-call vet was to put him down. A piece of my heart died that night, but I am finally getting to the point where I can remember the good times & focus on the fact he had a good long happy life.

When you witness a loved one die, it changes you. I find myself talking to his urn everyday just to say how much he is missed. I like to think of him as my little fluffy guardian angel, despite being an agnostic atheist. Perhaps I’m more on the agnostic side than I’d like to admit. :) It also brings the point home that nothing lasts forever, and good health or not, cancer or remission, eventually the day will come when each & every one of us is just gone. Just like that, one moment we’re here, the next we’re gone. It’s just so damn final, yet life continues with or without us. Somehow, this experience has given me a strange sense of comfort in facing my own mortality. It just makes me appreciate all the more the time I do have right now while I am still in remission.

Last but not least, after seven wonderful years, I had to make the heartbreaking decision to step away from my bowling family, in order to balance the demands of my many medical appointments alongside my new job. So yeah, the only thing constant this year was change, but I survived, and amazingly so has my other senior dog who just turned 15 after totally beating the odds he was given four years ago! It’s been a crazy year, which I’m sure glad to see the back of! But I am grateful for the little things, because life is short & things can change in an instant. Case in point, our little Facebook group lost another one of our lumpy alumni right around Christmas. She fought the same subtype of liposarcoma as me, but sadly after 15 years of multiple distant mets, she lost the battle.  The fact we had the same subtype in the same location, both with clear margins post surgery really makes her passing hit home, knowing I have this ticking time-bomb inside of me that could rear its head at any time when I least expect it. But then I look at my amazing little dog who has totally beaten the odds, and it gives me hope that perhaps I will be one of the lucky 50% who does the same.

Until my next update, here’s to calmer tides for each & every one of us in 2018!



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.

Have a sarcoma blog of your own that you'd like linked? Feel free to drop me a line or post your link in a comment below.

Thursday, 8 June 2017

Flashbacks ARE Real for Cancer Survivors

06/08/17 - Where has the time gone?! With three months already passed since my last round of scans & my next batch, a month away, I guess it’s time for an update!  Since my last post, between scans & the emotional effects of the past two years, I've really ramped up my efforts to rejoin the hamster wheel, and also took a bit of a social media break for an entire month before my last scans, just to focus on other things.  After the recent passing of several fellow myxoid/round cell warriors in the online support group I belong to, it was time to take a step back for my own sanity.

My visits to the sarcoma clinic are always “interesting”, so last time was no exception! Thanks to construction, we ended up taking a shuttle from the parking lot over to the cancer centre, which just happened to drop us off at the doors where radiation patients go - an entrance I hadn’t used since treatment. Now, I had heard of cancer survivors experiencing flashbacks of emotion during visits to the cancer centre but had never experienced it to this extent until this last visit. Scans are always an emotional time for any cancer survivor, but words cannot express the flood of emotions that rushed in as we walked through the waiting areas & halls of the radiation department. As if that wasn’t enough of a trip down memory lane, we then found ourselves walking through a hallway I hadn’t seen since my surgery to remove my sarcoma two years ago. To say that added to the anxiety was an understatement. On top of all that, for the first time, I had my chest x-ray at the hospital itself the same day instead of in advance offsite, so no peaking at results ahead of time! Between the flashbacks & scanxiety, it was a bit much to take, but I got through it. Fortunately, all my results were clear, so that was a huge relief! On our way out of the hospital, we walked right past the spot where I sat two years ago when I told my mom over the phone, I had cancer. Just one last dose of flashback for good measure, I suppose!

Of course, it wouldn’t be a proper meeting with my oncologist without changing SOMETHING with my scans yet again, LOL, so here is the latest! Per my request, he agreed to reinstate my abdominal ultrasounds (but not the pelvic ones, thank god, since they always had to do an internal one on me!), but he did advise, ultrasounds are not as sensitive as my annual CT scans. However, since we’d been doing them every four months, I wasn’t quite ready emotionally to give them up, so it’s really just for my own sanity that he reinstated them. The second change is due to some increasing pain I’ve had in my sciatic region/surgery area. He’s switching me from annual bone scans to a spinal MRI instead, which I have in just under a month. He said that they’re finding spinal MRIs to be more effective in finding bone mets in the spine. I’ve been doing some reading about spinal mets lately, and the research indicates that spinal mets are one of the most common sites of distant metastasis for myxoid/round cell liposarcoma patients. So, this is a good thing he’s added this to my roster of scans, but of course, since it’s new for me with higher sensitivity, cue in the increased anxiety that they’ll find something the bone scan missed. Sciatic pain asside, many liposarcoma patients with spine mets experience NO PAIN WHATSOEVER, so if your oncologist is only willing to do an MRI if you have symptoms, tell them to think again & insist they order at least one spinal MRI. The only time liposarcoma tumours cause pain is when the tumour presses against a nerve, and this is EXACTLY what happened to me with my first tumour. But to quote a fellow survivor, hopefully it’s just “creakedy old lady back" & nothing more! :)

In other news, after being laid off my job of nearly two decades while in the middle of cancer treatment two years ago, I am finally making some headway & was recently advised I was successful with one of my applications! I am so excited yet so nervous! After being off the hamster wheel for so long, it will be good to get back to some sense of normality. Now let’s just hope my next batch of scans doesn't throw a wrench into things! I busted my backside to get this job, so if my scans mess it up, I will be utterly devastated. And of course, as Murphy’s Law would have it, my favourite band just announced a whole bunch of tour dates, which I probably won’t be able to go to! Despite that, I'm practically having to hide from my computer to avoid buying tickets! Part of me wants to buy tickets just in case the new job falls through, but the other part is resisting the urge, just in case the new job or next batch of scans prevent me from going! Ugh, decisions, decisions! :p #FanGirlProblems! ;)

On a related note, one of the things I’ve missed most since being laid off is being able to help people. When I approached both the Canadian Cancer Society & CNIB to volunteer last summer, I was advised they were both undergoing restructuring & asked to check back in about six months. How ironic is that? I was laid off due to restructuring & turned away from volunteering for the same reason! So, with this year being my second birthday in remission, I decided to take matters into my own hands by raising $200 for charity - $100 for each year in remission! My goal is to achieve this by July 10th, which will hopefully be my second anniversary of being in remission! It’s through Canada Helps (registered charity, BN: 896568417RR0001), and funds will go to The Sarcoma Cancer Foundation of Canada, Wellspring, Humane Society & Canadian Chihuahua Rescue & Transport. By my birthday, I was already at 87% of my goal, so I’m almost there! :)

We don't know how strong we are until being strong is the only choice we have!  Sarcoma awareness.Another thing I've done to help spread sarcoma awareness is FINALLY purchase one of those sarcoma awareness t-shirts for both myself & my mom!  The slogan sums up so well the experience of everyone effected by sarcoma "We don't know how STRONG we are, until being strong is the ONLY choice we have!  Sarcoma awareness". 

Well, that’s all for now until my next update in July, which will include my next batch of scans - the spinal MRI, abdominal ultrasound & chest x-ray. Also, since there will be no time off for the first few months of my new job, I’m going to see what my oncologist thinks of changing my appointments/scans to every six months. Quite ironic, since I nearly had a stroke during my last appointment when he accidentally thought we were already at six month intervals! Previously, he'd suggested sticking to four-month intervals until the THREE year mark, so you can imagine the panic that set in at the thought of fewer scans at just two years. Since then, I’ve actually come around to the idea, so we shall see what he says!

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.

Have a sarcoma blog of your own that you'd like linked? Feel free to drop me a line or post your link in a comment below.

Thursday, 9 February 2017

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. :)


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.


Have a sarcoma blog of your own that you'd like linked? Feel free to drop me a line or post your link in a comment below.

Monday, 6 February 2017

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!  :)


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.

Have a sarcoma blog of your own that you'd like linked? Feel free to drop me a line or post your link in a comment below.

Saturday, 4 February 2017

#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


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.

Have a sarcoma blog of your own that you'd like linked? Feel free to drop me a line or post your link in a comment below.