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

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Anniversary Challenges & Mixed Results

07/08/16 - Wow, can't believe three months have passed already! Yep, it's that special time again where I get to worry about my latest batch of scan results. But before I get to those which I have already received by the way, a bit about anniversaries. Whether good or bad, optimist or realist, pretty much every cancer survivor has an emotional reaction to their anniversaries of which we have many. First, there’s the diagnosis anniversary of when your world was forever changed. Then comes the anniversary of your first cancer treatment, be it chemo, radiation or surgery. Then, of course, there’s the all important one year anniversary of when you were deemed cancer free. While some celebrate their anniversaries, others find them quite difficult. To my surprise, I fell in the latter - at least for the first batch anyway (diagnosis & chemoversaries).  I say I was surprised, because most of the time despite my obligatory week of stressing prior to scan results, I usually do quite well. I keep myself busy and find things to make myself happy and enjoy this beautiful spring we've been having. However, about three days before my one year anniversary of being diagnosed, I suddenly felt very depressed. I didn't feel like listening to my favourite music, didn't feel like watching TV, didn't feel like being awake, didn’t feel like going out. Basically, I felt numb for three days, unable to move forward.  It wasn't until I forced myself to listen to my favourite music that I was finally able to shake myself out of it, at which time I flipped into super productive mode & got a ton of things done.  I continued to be fine until my one year anniversary of starting chemo, which was exacerbated by the fact my grandpa who also had a rare sarcoma five years ago now has a new cancer, mantle cell lymphoma, and his chemo started almost exactly a year to the day from when I started mine.  To say this messed with my mind would be an understatement.  According to the liposarcoma support group I’m on, sarcoma survivors are more likely to get other forms of cancer.  Seeing my grandpa make this a reality on my own chemoversary amplified that fear.  This time, it took me a week to pick myself up & snap out of it.  I think the challenge with anniversaries, is it brings everything flooding back, and you can’t help but wonder if or when it is going to rear its ugly head again.  You want to plan for the future but you don’t dare because you’re not sure how much of a future you even have.  But then, you dust yourself off, give yourself a shake & think about everything you’re grateful for & how things could be so much worse. Fortunately, that’s the mode I prefer, but every now & then you have those dark days, and for me, anniversaries seem to trigger those big time.  Hopefully, this will get easier with each passing anniversary.  From what I’ve heard from other survivors, the first year is the biggest hurdle, though. If I can make it to anniversary #3 in tact, then I will truly start celebrating, because I’ll be out of that high danger zone for distant metastasis.  Of course, there’s always be a possibility even after three years, but as I’ve mentioned before, if it’s going to happen, it’s usually within the first two to three years after surgery.

Now for my latest batch of results.  It’ll be another month before I meet with my oncologist, however, his assistant emailed me my results this afternoon. First the good news. From what I can tell, my pelvic & abdominal ultrasound’s plus my CT scan are all OK despite the addition of a second/new ovarian cyst, in addition to the previously noted lesions on my T3, thyroid & iliac.  There has been no change in size for any of them other than the addition of a second ovarian cyst, but it’s a simple cyst not likely to be cancerous.  Still, they are recommending it be monitored every six months.  Now for the bad news. It appears my bone scan is inconclusive due to the presence of low grade soft tissue uptake where my sarcoma was removed.  This is most likely due to the surgery or radiation treatment, HOWEVER because my original sarcoma ALSO showed soft tissue uptake, they can not rule out localized recurrence in my thigh at this time based on this bone scan.  The scan also shows degenerative type uptake in my shoulders, lower lumber spine, knees & feet, but there is no evidence of mets to the bones.  What this degenerative type uptake means, I don’t know but they’re suggesting followup.  Over the past month, I’ve been having pains in my right foot even while sedentary & have discovered a lump in the bone not far from where the pains are which isn’t replicated on my left foot, so I’m a bit concerned. I’ve also been experiencing pain in my right shoulder, but I’m hoping it’s related to a previous fracture or previous tendonitis or bursitis I had in that shoulder many years ago.  I’ve also had pains in my right knee, but that was injured at the same time my shoulder was, so again, hoping it’s nothing & that I just need to drink more milk!  But I’m worried about my leg. I’ve noticed over the past month or so that the edema seems to have increased a bit…  I’m going to press for an MRI sooner rather than later, and if he won’t request one, I’ll press my family physician for one.  Given the inconclusive bone scan, though, I’m hoping it won’t be an uphill battle to get an MRI.  I was never a fan of just an annual MRI.  I’d much ratter have one every six months if not every four months.

Now if only they could move my appointment up, but unfortunately my oncologist is going on vacation, so it’s not an option.  I asked if I could see the only other oncologist that specializes in sarcoma in my area but was told it’s better for my original oncologist to go over the results, since he’s more familiar with my case.  Meanwhile, I’ve asked if he’ll be ordering any other tests prior to my appointment, so here’s hoping for that MRI….  Stay tuned….  More info when I have it.

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Almost There!

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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"A Place for Us to Dream"

03/15/16 - THANK YOU, universe!!!  Not only did you help me beat cancer, I’ve recovered well enough to see the announcement of my beloved Placebo’s 20th Anniversary Wold Tour!  Now to get back onto my elliptical to ensure my leg is as strong as possible for all those sprints to the barrier, and to pass all the various medical tests between now & then!  I just hope the venues don’t have a bunch of stairs for the floor level…  *anxious sigh*  is it December yet? And a heartfelt THANK YOU to Placebo whose music got me through one of the toughest year's of my life!  See you in nine months!  <3


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*[NOTE: Post title inspire by a lyrics out of Placebo's song "Narcoleptic", as well as the name of their upcoming 20th anniversary tour.]

Sarculator! There Truly Is an App for Everything! ;)

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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