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!
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