10/31/16 - For the first time that I can remember, I actually walked out of that place feeling happy, heard, respected and in full agreement with my oncologist regarding my surveillance plan going forward. And it's official, I am 16 months in remission!!! :) I got my regular oncologist today who not only was running on time, he was very clear re: my ongoing surveillance plan AND I'M FINALLY GOING TO GET MY MRI! :) He also assured me that the previous surveillance plan that he & I discussed at the start of this year WILL stay in place, contrary to what the other oncologist said last time! I actually told him in a tactful manner about the other oncologist NOT wanting to do MRI's on me at all "until symptoms appear" & that I was so upset by this that I went home & cried. He was very good about it & assured me I *will* get my annual MRI, so I am very relieved & happy! So, we're continuing with the chest x-ray every four months & the annual MRI of my thigh & annual CT scan of my chest, abdomen & pelvis. However, to my delight, there is one change - we're no longer going to monitor my ovarian cysts, as they've remained stable & will show up on the annual CT scan anyway, so f anything looks suspicious, we can address it then. Hurray, no more internal ultrasounds! Those are the worst!
Speaking of MRI's, I also got answers re: the increasing pain I've been experiencing in part of my surgical area. He confirmed that...
- (a) It's normal for extremity sarcoma survivors to experience this on an ongoing basis, and is most likely a result of radiation damage, in addition to all the scar tissue I have around my nerve.
- (b) it can take up to two years to truly heal from this surgery & all the radiation I had.
- (c) I may find at times it gets worse & other times it's not so bad.
- (d) The best thing I can do is stretch the area as much as possible, so looks like my yoga ball & I will be making a reacquaintance in the near future!
- (e) My hunch about this damage causing inflammation was spot on, which explains why the turmeric helps so much!
The other interesting thing to note, is he mentioned several times that my four-month interval of X-rays may last up to THREE years. Damn! Here I thought I was graduating to six month intervals in the next eight months but not necessarily! Oh well, if that's all I have to complain about this time around, I'll take it!
Better yet, we inadvertently got free parking today when the hospital changed their parking payment system without us realizing! We could've gotten ticketed but fortunately for me, we didn't! Can this day get any better? Well, yes...YES, it can! ;) My luggage is all packed and i'm ready to finally see Culture Club for the first time after waiting 33 years, followed by a whole lot of Placebo gigs not long after that, and who better to do it with then my Kindred spirit in Placebo, packing, and planning! Let the fangirling begin! :) <3
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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
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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