Good News, Good News, Good News! :)

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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A Bitter Sweet End to My First Year as a Sarcoma Survivor.

07/04/16 - In six days, it’ll be a year since my surgery to remove my 25x13x8.7cm myxoid round cell liposarcoma from my left thigh, and today I went for my latest four-month checkup at my local sarcoma clinic, where the oncologist said my tests were fine, despite that inconclusive bone scan, about which he said the radiologist was just being overly cautious.  I keep telling myself I should be celebrating completing a year of NED (no evidence of disease), but sadly, today’s visit just left me feeling frustrated & fed up.

***WARNING: RANT ABOUT MY LOCAL MEDICAL SYSTEM* BELOW***  There probably isn't much useful info to follow in this post, I just really need to vent!

Frustration #1: First I saw the resident doctor (Dr. #4) who was awesome, but then I was told my oncologist’s was still away, so I’d be seeing another oncologist (let’s call him Dr. #3) who was semi-retired. Oncologist #2 who I’ve seen a few times when mine was away was in the process of taking over Dr. #3’s practice.  BUT…then when the resident doctor came back, Dr. #3 was nowhere to be seen!  Instead he came back with Dr. #2!  Dr. #2 is the other oncologist that I wanted to get a second opinion from.  However, when I asked about getting a second opinion from him a month ago re: my surveillance plan, I was told there wasn’t any point because both he & my regular oncologist (Dr. #1) collaborate on everything.   Also, when I asked a month ago to move my appointment forward, so that I wasn’t stuck waiting a month to discuss my results, I was told it would be better for me to see my regular oncologist when he returns from vacation…yet lo & behold, who do I get today but the oncologist I wanted to see a month ago but was told no!  So why then did they make me wait a month when they had an appointment available sooner WITH THE DOCTOR I SAW TODAY?!?!  I KNOW they had one available, but they specifically didn't book it because Dr. #1 was still going to be on vacation!  Blah.

Frustration #2: Then while the resident doctor (Dr. #4) made me so happy by telling me that Dr. #3 would likely order an MRI based on the results of my bone scan, Dr. #2 comes in & says if it was up to him, he would NOT recommend any MRIs EVER until I start presenting symptoms, because we have to be fiscally responsible within the constraints of our country's healthcare system!  He also said he’s worked in the US healthcare system before, and that American oncologists order way too many scans & that it’s just not sustainable.  He even said doctor's in a certain sarcoma centre elsewhere in our country order too many scans!  So, one doctor tells me one thing & the other tells me another IN THE SAME APPOINTMENT!  So, here's me stuck in the middle wondering do US doctors order too many scans as a money grab, but then do doctors in my country not order enough scans to save a buck & is the right number of scans somewhere in between?  I don't know what to think anymore!!! :(

Frustration #3: Now, to be fair, Dr. #2 did say that he would order an MRI to help “ease my brain” (yes, he actually used that phrasing!), but he made me feel an inch tall for even wanting an MRI & for daring to QUESTION things, that I decided just to forget it & get the hell out of there.

Frustration #4: Ah but there’s more.  On the form they have you fill out whenever you go there, they ask if you’re experiencing any pain.  I have been, so I told him about it but yet again, was made to feel an inch tall, even though I reminded him that I had discomfort in my leg for nearly a year as a symptom of my sarcoma before it was found, so now I bring up anything that lasts more than a month or two JUST TO BE SAFE.  Yet he still made me feel an inch tall for bringing it up.  There were a few other things he showed complete lack of sensitivity to, but I've decided to just leave it at this.

So yeah, I should be happy,but right now I’m just really, REALLY pissed off.  Sorry to bitch & complain, but I figure this is more constructive way to deal with my feelings right about now.  I was so upset earlier, that I had a good mind to go to my next set of scans, get the assistant to email me the results like she normally does & then if they turn out okay, just walk away & not bother with going in for my next appointment.  Another part of me thinks, “Oh, just put up with it for one more year & then walk away”.  But sadly, I am well aware how important it is to get the scans they are willing to give me for the rest of my life. I just really don’t feel like dealing with THEM anymore.  I wish I could just have the scans & only see the doctors if they find something, but sadly, they won’t allow that.  I’m still THIS close to just walking away, though.  If they want me to just shut up & be a good little patient who doesn’t ask questions & save money by doing fewer scans, fine.  I just won’t go.

ON A HAPPY NOTE, there was one other thing that went right today… They FINALLY removed the non-desolvable stitch that’s been in my leg for nearly A YEAR! :) :) :)  I tried removing it like I removed a few of the others they missed but my arm is too short to hold the stitch in place while I cut it out with the other hand, LOL!  So, yay, I’m NED for one year & counting & that damn stitch is finally out!  :)  Gee, I feel better already, and I haven’t even posted this yet. :)  Thanks for reading this if you actually got this far & sorry again for being so grumpy.  I’m sure I’ll feel more positive in a day or two.  Oh yeah, and I just realized I just have one more batch of tests to get through before my trip, so YAY!  OK, now I feel even happier, LOL!  Yep, just give me  my favourite band!  They make everything better. <3

One more thing! Despite my venting in frustration above, I feel very grateful to be NED & even though their bedside manners leaves a lot to be desired at times, I really do have a great medical team.  I’ve been told my scar is a very “nice” scar compared to others people have seen (and this is medical people telling me this!), plus I never had any complications, no infections or anything like that, whereas I hear loads of stories about other sarcoma patients having infections & all sorts of complications.  So, for that, I am truly grateful, and I’m well aware life could be a lot worse.  At least I have my leg, I’m NED & did I mention I get to see my favourite band in a few months?!  ;)

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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!

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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So Happy It's Gone! - Four-Month Followup (Cont'd)

Great news!  My ultrasound results came in & everything appears stable compared to my last one from April, so I can officially say that I am still cancer free!  Yay!!!  But booo, because now that means I’ll be officially laid off at the end of this month if I don’t find a job at my previous employer ( but that’s not likely to happen, since they’re closing or moving all the departments I would’ve been interested in applying for!), but at least I can FINALLY move on with the rest of my life & start looking for work elsewhere!  I’d been wanting to wait till my first four-month surveillance before moving forward, just to err on the safe side!  Wow, I feel like a huge weight has been removed from my shoulders!  Now, I am well aware this is still very early days, and there’s always a very real possibility *it* could return, but for now, I can relax & move forward…well, once my physio is done in a month, that is.  I’m on the home stretch now!!!  :)  Oh, and I definitely have ovarian cysts, but as mentioned in my post from yesterday, they’re totally unrelated to my myxoid liposarcoma & I’m not in any pain, so all is well.  That’s it from me for now till probably next month when my out-patient physio finally ends!  OMG, I am so giddy, I can’t wait!!! Placebo 2016 tour here I come!!!  Thank you to everyone who's supported me over the past nine months! I couldn't have done it without you!

*[NOTE - Post title inspired by the song "Happy You're Gone" by Placebo off their 2009 album, "Battle for the Sun".]

Passed the Test - First Four-Month Followup & Scans

11/09/15 - Saw my surgical oncologist today.  He only had results from my chest x-ray & is still waiting for the ultrasound images which should hopefully be in over the next few days, but the chest x-ray came back NED (no evidence of disease)!!!  :)  What a huge relief!!!  With regards to my ovarian cyst, I didn't press about the disappearing & reappearing cyst saga (I could swear he told me it disappeared several months back, but the ultrasound tech said it was definitely visible!), but I did ask about it & he suggested it's been there for a long time but said he'd forward the results to my family doctor, and that it's best to followup on that with her.  I'm sure she'll send me off to a gynaecologist, but I've decided I'm not going to stress about it, because he said it's not related to the myxoid liposarcoma, plus it's not causing me any pain.

As for my ongoing surveillance plan, it's a bit different than I originally thought.  Rather than every three months for two years & six months for five years, it'll be first two years: chest x-ray every four months, MRI every six months & CT scan of abdomen & pelvis annually.  Then for five years: x-ray/MRI every six months & CT annually. Then we review at that point on what to do going forward.  It was suggested by a fellow liposarcoma survivor that he was prescribing CT scans less frequently than some doctors to reduce my radiation exposure, and this is indeed correct.  That's exactly why we're only going with a CT scan annually. :)  Another interesting thing he said that in all his time treating myxoid sarcoma patients, he has yet to come across someone with METS (metastasis) in the abdomen *who didn't also* have METS in the lungs - another reason to reduce the exposure to CT scans.  

It was funny, he kept saying I should've been a doctor because of all the reading & research I do!  I think it's both a blessing & a curse for him, because I keep him on his toes & always have a bunch of questions, LOL!  Anyway, I'll keep you posted on the ultrasound, where they are also checking my kidney on my right side, but given what he said today, I have a feeling it's going to be fine.  Cross all your appendages for me there are no surprises!  One last thing, he said that I will likely have weakness in my leg for the rest of my life, even with all the physio.  Hopefully, time will surprise both of us, but with the way my leg feels these days, I think he’s right.  I’ve come a long way, though!  Still working on that turbo-wobble for Placebo’s 2016 tour, though! ;)

*[NOTE: Post title loosely inspired by a line out of "Pure Morning" by Placebo found on their 1998 album, "Without You I'm Nothing"]

Babble, Babble, Bitch, Bitch...Stupid Alien, Can't Wait Till You're Gone!!!

07/07/15 - Had my pre-surgery telephone consultation with a nurse this morning. She told me to bring copies of my personal directive & power of attorney docs to surgery on Friday. Wow, I know that's probably standard procedure with major cancer surgery like this, but that sure threw me for a loop! I've had major surgery several times & not once have I been asked to bring that kind of thing before. Mind you, it's been 10 years since my last major surgery, so perhaps that's something they do now with everyone...

And tomorrow I have to go across town to see the anesthesiologist, which I'm rather annoyed about, because I'd signed up for laughter yoga at Wellspring but I can't do both, so I have to cancel. I was really looking forward to it, too, as I've always wanted to try it since seeing it on the news a number of years ago. Oh well, hopefully, they'll have another session of it in the fall when I'll be well into my recovery.

*[NOTE: Post title inspired by lyrics from Marilyn Manson's song "This is the New Shit" off their 2003 album, "Golden Age of the Grotesque".]

Pre-Surgery Consultation

07/06/15 - Quick update.  Please forgive my lack of finesse in writing today.  Got less than four hours sleep, as the anxiety of everything is starting to creep up on me, but here goes… Saw my oncologist today for my pre-surgery appointment.  Everything’s on track.  The bug bite from hell, though slowly healing (my foot’s still more swollen than usual), won’t have any impact on my surgery.  He’s also not worried about all those nodules that came up, because everyone has nodules throughout their body whether they have cancer or not, so they’ll watch them & if any get beyond a certain size, they’ll take further action.  Re: my concerns about the >25% round-cell component, he says that it does NOT change my current treatment plan, so he is not overly concerned about it at this point.

As for surgery itself, surprisingly, it’s only going to take two hours & he aims to remove my tumour (aka “the alien”) in one piece, which will reduce the chance of it spreading.  I’ll be in hospital for about a week, possibly even less - yes, LESS!  I juste hope they don’t try to push me out of there prematurely just to free up a bed.  They’ll also do toxicology reports at the time, which will take two weeks to come back, if memory serves right.

I will have some physio in hospital, but considering I’ll have stitches still healing, not sure how much that’ll entail, aside from wobbling & hobbling around very slowly!  Oh, and thank god, there’s no requirement for a skin graft, which is a relief. He’s expecting my recovery time to be about three months, so hopefully I’ll be done before my short-term disability runs out, cause otherwise I’ll be in for a substantial income drop if I have to go onto long-term disability.  So, that’s pretty much it.  I have a pre-surgery preparation appointment via phone tomorrow morning, as well, and on Thursday I have to call for my surgery time.  I, of course, forgot to ask my oncologist several other questions, despite writing numerous questions down!  But it doesn’t really help when you forget to write the question down in the first place!  :p  Damn it, I’m so tired right now, I forget the questions I forgot!  :p  Can’t even come up with a Placebo lyric to go along with this post!  :(  Zzzzzzz...