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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How to Get a Reaction Out of Your Sarcoma Specialist - Ask About Nomograms! ; )

03/07/16 - First things first, today’s news re: my chest x-ray & MRI was GOOD!  :)  Still no mets eight months after surgery!  :)  Phew!!!  What a huge relief!  Second, my oncologist is a wonderful surgeon, and today, I told him so.  I’ve read about several extremity myxoid liposarcoma survivors with post-surgery complications, such as needing wound vacs, infections & still having major edema long after surgery, and I was lucky enough not to have any of those issues.  The significant edema I had up till two months after surgery has all but disappeared & is just very mild now, so life is good. :)

Third, although my oncologist is a wonderful surgeon, his listening skills could use some work!  Last time I saw him in November, I reviewed my surveillance plan with him, and I said to him, “Okay, so I’m getting an MRI every six months, an x-ray every four months & an pelvic/abdominal scan annually?” and he said YES!  Today, he changed the plan on me.  He is always in such a rush, sometimes I don’t think he properly hears my questions. :(  Having worked in customer service for nearly two decades, my job was to be a good listener, so...  My mom goes with me each time, and she agrees, though today he was a bit better, as they weren’t nearly as busy as they usually are & I got about twice as much time with him than I usually get.  But getting back to my surveillance plan, we’re going to do everything annually EXCEPT for the chest x-rays, which we’ll keep as every four months.  The rest we’ll scatter throughout the year, so that my body isn’t exposed to a whole bunch of radiation all at once.  Also he’s adding the bone scan back into the mix.  Not sure if he’s doing this because of the discomfort in my ankle & the pain in my arm or if he would’ve prescribed that anyway, but that’s the plan for now. This, of course, drives the planner in me nuts, because I like to know what I’m having & when I’m having it.  Now I get to be surprised, so I’m just going to have to learn to live with adventures in scan land, LOL!  :p  He feels doing an MRI more frequently could do more harm than good, due to the extra exposure to radiation.  He is still adamant that 90% of mets cases with myxoid round cell liposarcoma involve the lungs either with or without mets elsewhere. That is why he’s so set on concentrating on the lungs & just doing everything else annually.  Last but not least, that liposarcoma nomogram…

Boy did he have a reaction to that, but he made some very good points.  Despite the nomogram coming close to the prognosis some of my fellow survivors were given from their sarcoma specialists, he said the 12 year prognosis prediction of the nomogram is no good, because the sample size of the research is just too small.  If it was a breast cancer nomogram, the nomogram would be more valid, because of the huge numbers of women who get breast cancer, so the research data is much more reliable.  However, he did say that the five-year liposarcoma survival prediction is accurate, so long story short, for a large, high grade tumour like I had, there’s a 40% chance of mets within five years of surgery.  Despite all that, he asked to photocopy the nomogram, so that he can go on their website & play around with it.  Last point, he said that the nomogram can do more harm than good, because if an insurance company got a hold of it, they could try to deny coverage even after the five year point.  Right now as it stands, if you go five years without a recurrence, insurance companies consider you “cured” of cancer. Oh, one final point he made about the problem with many of these studies is that there's a lot of controversy even in the medical community about how sarcomas are classified, so what may have been considered round cell myxoid liposarcoma 10 years ago may not be now, etc…  He just really felt the nomogram in this case does more harm than good.

That’s about it for now.  Not sure yet when my bone scan will be, but I believe they’ll give me a date soon, as it’s been nearly a year since my last one. Here’s hoping that scan will be just as uneventful as my MRI & x-ray!  :)  Till then, enjoy everyday for even the little things & don’t be afraid to follow your dreams, because life can change in an instant.

PS - Damnit, he never did clarify tumour burden, but I guess it’s a moot point now since I’m going to forget I ever read that nomogram!  I will, however, leave the link up, so you can ask your own oncologists about it.  If you do, please be sure to share in the comments section below what they said. I’d love to compare notes!

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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.

Hoping for the Best

03/05/16 - It's that special time again. Where have the last four months gone?!?! My next oncologist appointment is on Monday to discuss my  latest chest x-ray results from six days ago and my MRI from January. I know the MRI was all good, but I'm going to wait till Monday to find out about the chest x-ray. That darn scanxiety is starting to creep in again now that I'm at the eight month post surgery stage. I read somewhere that 90% of metastases with myxoid liposarcoma  occurs within the first two to three years, and often you feel fine and have no symptoms which doesn't really help matters! But I've had some odd aches and pains, which I hope are nothing, but when something like this happens, you become paranoid that it's something more. If you've read the beginning of my cancer journey, you will understand why this is exacerbated in my case. Crossing all appendages that everything is fine, so I can have four glorious months of no scans! Because my three types of scans are all at different intervals, sometimes I have as little as two months between scanned and other times I have as much as four months between scans. I can't wait to get to the two year point where two out of my three scans are every six months.

Meanwhile, I have been keeping super busy with my new blog and YouTube channel dedicated to talking tech from a visually impaired perspective. I swear, I work more now doing that than I ever did working for money, lol! But at least it keeps me busy and keeps my mind away from that dark place. But the chances of Youtube paying the bills anytime soon is pretty much non-existent, so I have started the ball rolling on resuming my job search. The job market still sucks big time where I live, so at least I have other things to keep me busy, otherwise I would go crazy.!

We've had really nice weather this winter, so I've even managed to get out on some walks  with my dogs, which has helped to further strengthen my leg. Amazingly, I feel stronger going up the stairs now, which I have no idea how that happened since as of January 1st, I totally fell off the physiotherapy bandwagon, and have been a bad girl and not done much of anything the last two months as far as physio goes! I think I finally just got to the point where I'd had enough after five months of daily physio and just wanted my life back! I have regained enough strength in my leg to do pretty much everything I want , though a bit slower than before, and the remaining issues with my leg will probably be there for a lifetime. I am skeptical that physio will do much more for me now at this point.

Back to my appointment this Monday, I'm printing that  liposarcoma nomogram as I type this, so I can finally ask my oncologist what his thoughts are on it, and once & for all get an answer as to how to calculate tumour burden!  Some of us on the FB support group have been dying to know - ok, bad choice of words! - we've been REALLY wanting to know how to properly calculate it, so that we can fill in the nomogram properly.  Some definitions suggest taking the largest dimension of your tumour, while others say to take the two largest dimensions.  So, for instance, my tumour was 25x13x8.7cm, so 25=38 = my nomogram sucks for the 12 year prediction survival rate, but (38%) but at least I have a 63% chance of making it five years.  Um, yay?  One thing this nomogram doesn't account for is radiation, though, as not all patients had radiation, if memory serves right, but some did, so even though they didn't measure it, it's still a part of the picture in a way, so I am very eager to hear what he says on Monday.  I am well aware with stats, though, that you have a 50% chance of outliving them & a 50% chance of not.  Hell, one of my dogs has a heart condition where he was given six months to two years & it's been over two years & he's still with me.  He can given do stairs still & sometimes does mini play sessions.  So, I've seen with my own eyes that stats aren't everything, but it  would still be good to know.

Cross all of your appendages for me that Monday goes well!