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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Don't Believe Everything You Think!

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

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Breathe...Believe!

09/25/16 - It's been an eventful week! It started off with great news!  Got the results of my shoulder scans, and it turns out I have tendonosis, which is similar to tendonitis but there's less inflammation & it's chronic.  Why on earth are you happy about that, you ask?  Well, at least it's not a liposarcoma recurrence!  I've actually run across some fellow survivors whose recurrence was misdiagnosed as tendonitis or tendonosis, so I am very relieved to say the least!  :) Even though I figured it was probably something like tendonitis, there was a part of me that was afraid it was something much worse.  Tendonosis may  suck, but at least it's not going to kill me!  :) And it's slowly getting better, which my doctor says is normal as some cases can take several months to heal.  Meanwhile, I have one more batch of tests next month for my usual surveillance before my trip for Placebo's 20th anniversary tour!   Here's hoping my lucky streak continues & I make it to 16 months NED (no evidence of disease)!  I can't wait to get out of here for a good while!

On Wednesday, I finally got my sarcoma ribbons!  Yes, you read that right, ribbons in the plural!  I ended up getting not one but two tattoos, one with the yellow sarcoma awareness ribbon honoring survivors, warriors & the fallen & the other with the plum ribbon honouring caregivers.  Originally, I intended to get these in July for my first anniversary of Bing in remission, but better late than never!  :) Of course, I put my own personal spin on them to make them more personalized to me & am so pleased with how they turned out!  My tattooist did a wonderful job of re-creating the vision in my mind's eye!  Of course, I also managed to incorporate Placebo into the mix & included scripts  inspired by some of Brian's lyrics.  As a pair, the tattoos for me honour family both two & four-legged, friends both near & far & the music that has helped me get through life, especially the past year following my sarcoma cancer diagnosis.  They also represent hope, strength & finding inner peace.  I've also come to the conclusion that there are a LOT more nerves in the wrists than there are in the upper arms!  Still, the pain from this latest batch of tatts doesn't even come close to last year's one foot drain from hell!  It's all relative, y'know?  ;)

Now I'm throwing caution to the wind & am getting two more done on top of the two I just got.  When they're all complete, I'll be up to a total of six!  The next batch will honour my furbabies, as well as a big one to honour Placebo's 20th anniversary tour!  I'm both excited & nervous at the same time, since the anniversary one is going to be the most ambitious tattoo I've yet to get!  It's going to take more than two hours to complete!   The things we do for our body art & a love of music, LOL!

Speaking of body art, recently, the news aired a story about a woman who does tattoos to cover scars for cancer patients & others who have scars for various reasons.  It almost sounds perfect, except for the fact that there's one part of my massive scar line that is SUPER sensitive, so much so that there is no way I could handle getting tattooed there, as it's even uncomfortable when I gently touch that area.  Otherwise, it would've been perfect, since most of the scar line is completely numb with little to no feeling whatsoever.  But no, I think I'll stick to torturing the other parts of my skin instead, thank you very much!  :p

Interestingly, I waited 17 years between my first & second tattoos, and now all of a sudden I'm on a roll, getting tattoos left right & centre.  According to my tattooist, this is apparently quite normal after someone has experienced a major life event, such as cancer.  Suddenly, it just makes everything clear as to what's important & you lose that fear of "should I or shouldn't I do this or that?".  "Live for today, hope for tomorrow" pretty much sums it up.  As cancer survivors, particularly high grade cancer survivors, we just don't know how much time we have & it it'll come back.  Of course, nobody truly knows how much time they have left, but it's exacerbated ten fold when you're a survivor.  Having a 40-50% chance of distant metastasis or recurrence within five years & a 56% chance within 10 years gives you a whole new perspective on taking chances in life.  Just to clarify, in case I haven't yet already, those 85% as of five-years survival rate stats I wrote about earlier on in my blog did not differentiate myxoid from myxoid round cell, the latter of which has a much higher rate of recurrence & poorer long term prognosis.  So, to the family & friends possibly wondering "Why is she doing all this when she's still laid off work?", that's why.  Put simply, I don't have the luxury of assuming I have the luxury of time.

Speaking of time, I've never been religious or very spiritual for that matter, but I'm really starting to believe everything happens for a reason & at the right time.  Last week it was announced that my childhood favourite, Culture Club, whom I never got to see is going on tour, so after 33 years of waiting, I will finally get to see the original lineup live!  Although I've seen George perform solo, I've yet to actually see all of Culture Club as a whole perform together in one room!  Too say I am ecstatic is an understatement!  Being laid off in the middle of cancer treatment has actually been a blessing in disguise, because it's given me time to do even more travelling than usual without the worry off it interfering with a job & vice versa - and to just ENJOY it.  So, now I have two Culture Club shows plus a whole bunch of Placebo gigs to look forward to over the next few months!  Life is good!  I may not know what the future holds health or job-wise  for that matter, but I am learning to just trust in the universe & that things will work out the way they're meant to. This hamster is going to enjoy her time away from the wheel for a bit longer!

How has being a cancer survivor changed your life perspective, and how did you mark your first anniversary of being in remission?  Feel free to drop me a comment below!


[NOTE: Title inspired by lyrics from Placebo's "Loud Like Love", which can be found on their 2013 album of the same name.]


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Old Results, More New Tests

09/13/16 - Finally touched base with my doctor's office about the  final pathology report from when my uterine fibroid was removed 11 years ago.  Good news, it does state no malignancies were found.  Note the plural tense there. Turns out I had NUMEROUS fibroids, whereas I was originally lead to believe it was just one big grapefruit sized one!  The largest one, however, was 17cm on its largest dimension, and all the tumours together along side my uterus were 27cm.  I also found out the technical name of all my fibroids - leiomyomata. So, of course, off to Google I go to see what it has to say about it.  It's nice to know the proper name of it..er...them...after all these years.  Never knew enough to even think of asking for this kind of info back then.  

Still on the topic of my family doctor, after my last visit, I mentioned the recent discovery that sarcoma patients may have genes for other types of cancers that are known to be genetically passed on that make us more susceptible to sarcoma.  Particularly, researchers are starting to believe that those with the colon cancer & breast cancer gene may be at increased risk of sarcoma & vise versa.  So, although they haven't been able to find a sarcoma specific gene, they have noticed sarcoma patients are more likely to have genes for these other cancers.  Well, guess what?  My grandma & great grandma on my mom's side both died of colon cancer.  With that in mind, I wanted to know if we should start screening me early for colon cancer, since my grandma was only 52 when she died.  So, here we go, another test to add into the mix. Ugh...  Not looking forward to that one!  Good thing I've had an epidural before & know they work on me!!!  I'm on a waiting list for that, though, so no idea when that test will be.  Watch, they'll try to schedule the colonoscopy during my Placebo trip again, ppphhhht. Can you say RESCHEDULE!  :p

Well, that's about it till I get the results of today's ultrasound & x-Ray on my shoulder.  I will report back in a week or so once I have those results.  Never thought I'd ever be saying this, but here's hoping it's only arthritis or tendonitis!


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Saying Goodbye to a Fellow Survivor, Plus Summer Update

09/09/16 - Still a month to go before my next round of tests to check my cancer hasn't returned, but I thought I'd pop in with a little update.  The summer was good while it lasted.  We've had a lot of rain this year, but whenever the sun was shining, I took advantage of it to go for walks or just sit outside with my dogs to enjoy the fresh air & greenery - something I didn't get to do much of last year during recovery.  It's been nice relaxing without having to worry about being somewhere (like the non-existent job I've yet to find since being laid off!).  Hey, if you don't laugh, you'll cry, right?  Gotta find a silver lining somewhere! :)  For those new to my blog, in 2015, I had a very large high grade liposarcoma removed from my thigh.  Check the side menu to the left for the link to my post where I describe the beginning of my journey with this rare cancer.

All this wet weather has led to an interesting discovery.  Ever since the rain started falling, I've noticed an increase in pain on my surgery site, along with my shoulder which was broken years ago when I was hit by a car.  Initially, the connection wasn't obvious, but now I'm starting to think the weather may be causing whatever is going on to get worse. At first, I blamed the shoulder pain on possible tendinitis, since I did have issues with it about 10 to 15 years after it was broken.  I figured I'd aggravated it while lifting my monitor a month before, but upon speaking to my family doctor, it seems it's not normal for tendonitis onset to have a month delay, nor should it be lasting THIS long.  It's been three months of me being super gentle on my shoulder, yet I'm still experiencing pain.  Hopefully, it's just the onset of arthritis, but my family physician is taking it seriously, given my history.  So, cue in yet another ultrasound & x-ray, yaay! :p  My favourite things, LOL, not!

Speaking of tests, my family doctor has also agreed to try to get a copy of the pathology report from my grapefruit-sized uterine fibroid that was removed back in 2005.  Back then, I didn't know enough to even think to ask to see it, so I just figured no news was good news when I never heard anything about it after the surgery.  Knowing what I know now, I want to see the report, even though they say it's unrelated to my sarcoma.  The fact still remains that in the space of 10 years, my body grew two large masses.  I want to see that report!

Back to the subject of the pain I've been having...  Recently I started taking turmeric upon the recommendation of some of my fellow liposarcoma survivors for my shoulder, but to my surprise, the pain in my surgery site ALSO almost completely disappeared within 24 hours but returns whenever I stop taking it.  Turmeric is said to have a very strong anti-inflammatory agent so now I'm really baffled.  I don't think a sarcoma recurrence would inflame any of the tissues, BUT I do know of other sarcoma patients whose recurrences were misdiagnosed as tendonitis, so I'm really happy that my family doctor is not sweeping this under the rug & is at least taking a look to be on the safe side.  I should have the results within a week, so cross your fingers for me all goes well.  I assume it's either arthritis, tendonitis or both in my shoulder & just the aftereffects of surgery & radiation in my thigh, but still, there's a small part of my mind that worries it's more than that. OK, maybe not that small!  Although any distant metastasis is more likely to occur in my abdomen or lungs, liposarcoma has been known to metastasize to odd locations, so I don't take anything for granted.  We're not scanning my leg at this point (I'll ask about that next month when I meet with my oncologist), but if anything turns up weird in my shoulder, my family doctor will order an MRI.  MRI's have a long wait time when they don't think it's life threatening, so hence the reason we're starting with this other batch of scans.

Meanwhile, next month is my next batch of usual scans to check specifically for distant metastasis. They're sending me for a second CT scan this year despite the original plan being for one CT scan annually, alternated with a chest x-ray & abdominal & pelvic ultrasound the rest of the year.  This means increased exposure to radiation, and to quote my oncological team, CT radiation is not insignificant, so I'm not exactly thrilled about this. But somebody messed up & only ordered a chest CT in June, plus the usual pelvic & abdominal ultrasound, instead of scanning everything in just one CT scan like we'd previously discussed.  So, now they're doing the CT scan of everything in October, plus they're still doing the pelvic ultrasound, most likely due to my ovarian cysts they're keeping a careful eye on.  *sigh*  Oh well.  It's not worth the stress to argue with them, especially after what happened last time!

Getting back to my surgery site, though, the pain is quite severe when it does happen, but thankfully it's not constant. I think that pain could be sciatic inflammation. Fortunately, that doesn't keep me awake, becaus it only lasts for a few moments & happens when I move a certain way or try to stand or sit, but the strange thing is, it's not every time.  Because of this, it's next to impossible to replicate  for my oncologist.  My shoulder, on the other hand, kept me up at night for about a month.  Ah, the joys of getting old & being a sarcoma survivor!  :p   Despite all this, I am in good spirits & really looking forward to my trip this fall to see my favourite band Placebo's 20th anniversary tour!  I think it'll do me a world of good to get out of here for a while!

On a more sombre note, I would like to pay my respects to Jeff Landes who passed away from his six year battle with liposarcoma earlier this summer.  Every liposarcoma survivor knows this cancer has a high tendency to recur & many experience multiple recurrences, especially with well-differentiated & de-differentiated liposarcoma.  His passing hit me particularly hard, because he was one of the first people to reach out to me when I joined the liposarcoma survivors support group on Facebook.  Wherever you are now, Jeff, thanks for sharing your story & spirit with the rest of us lumpy folks.  Your sense of humour & amazing spirit are very much missed.

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First Anniversary Cancer Free! :)

07/10/16 - Well, on a happier note, I have officially made it to my first year anniversary of being cancer free (my limb sparing & life saving surgery was exactly one year ago today!), and I am happy to say that I have finally calmed down from last week! I have decided I will go to my next appointment, but just take their lead and let them do all the asking.  I figure this way, I will at least be able to get all the tests that they are willing to prescribe me for the time being.  Hopefully, the appointments will go more smoothly that way without them making me feel like a five-year-old!  I've also decided to mark the occasion of my first anniversary of being cancer free with a tattoo. Now just to decide exactly what to get!  For sure it'll have the yellow ribbon that symbolizes sarcoma, plus it’ll most likely have a butterfly or flowers. It will also feature some lyrics from, yep, you guessed it, Placebo!   I am also going to take part in the #KnowSarcoma campaign one of our national cancer organizations has going on for sarcoma awareness month (July), and I am also going to contact the cancer society to see what would be involved in becoming a peer support telephone volunteer. I would really like to be able to give back to new sarcoma patients who undoubtedly have a million questions like I did after I was diagnosed.


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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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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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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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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!

First Post-Surgery MRI Results, Final Pathology & More.

01/20/16 - Finally read all my reports - MRI from last week, November 2015 x-ray & July 2015 final pathology.  It seems to be the general consensus amongst liposarcoma patients to ALWAYS read your own reports, so that’s the plan going forward.  Many thanks to the wonderful administrative assistant at my oncologists office who scanned them for me.  She really is the best, I wish they would clone her!

First up, my first six-month post-surgery MRI results: While my left inguinal lymph node has increased from 12mm to 14mm & there are a few small pockets of fluid, everything else looks good & I am still NED six months after surgery!!!  *Happy wobbles* THANK YOU, UNIVERSE!!!  They suggest monitoring the lymph node, but that's only to be expected.  No big deal. :)  Just one more body part to add to the surveillance list. :p

NOTE: For any friends or family reading this, that was the crucial part of this post.  The rest is probably of more interest to fellow survivors & warriors, so no need to read further if technical stuff freaks you out.  :)

As for my July 2015 pathology report, which I’ve never personally seen for myself till now, I was hoping they’d do a re-tally of my round cell component for the entire tumour.  Unfortunately, that wasn’t the case, but it occurred to me that perhaps they can't get one post surgery due to the radiation I had which would've killed some of the tumour.  I'll just have to go with the original biopsy RC percentage of >25%.  For those just tuning into this blog, that means a higher chance of recurrence & distant metastasis.  Also, it seems the tumour did shrink a tiny bit after radiation, as the report said it was 24x12x6.5 upon removal.  Before surgery when I first had an MRI in April 2015, I was told it was 25x13x8.7cm.  My oncologist originally told me it didn’t shrink.  They must consider the difference to be too small to technically count.

Last but not least, I got a copy of my chest x-ray report from November, 2015, which I already knew was clear, but as above, I wanted to read it for myself. I must say, it has to be the shortest report in history!  It was literally one line “The intrathoracic contents, regional bones & soft tissues are all unremarkable.”  Hmph!!!  How dare they call me “unremarkable”?! ;)  LOL!  Just kidding.  If being unremarkable means no new aliens have decided to colonize the lining of my lungs & heart, I’ll take it!  ;)

I also asked about the tingling I’ve increasingly experienced in my hands & feet.  According to the email from my oncologist’s office, he is not concerned about that right now, as it’s very common and can be caused by a number of things.  However, they did suggest I avoid going to any chiropractor for the time being, and said if my back gets too bad to book an appointment with my oncologist.  Interesting.  Sounds like they don’t want to disturb anything, like that T3 nodule they’re watching…  I thought a visit to the chiropractor might help with the tingling…  So much for that idea!

Next up is my four-month chest x-ray & followup in March 2016.  In the meantime, I’ve got a few things in the works to share here between scans, so stay tuned. :)

Thanks for reading! :)  If you enjoyed this post, please help spread #SarcomaAwareness by sharing it on Google+, Twitter or Facebook using the links below. You can also subscribe to this blog using the links on the left.

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.

They Say Bad News Comes In Threes.

01/14/16 - Wow, first Lemmy from Motorhead, then Bowie, and now Alan Rickman who played Snape in Harry Potter has also died of cancer at age 69. Well if I wasn't nervous before for my first six-month MRI today,  I am NOW!   But least it was a different kind of cancer & he was much older than I am. OK,  calming down now... Give me a minute, though, that could change!

My First Six-Month MRI Tomorrow

01/13/16 - I’ve got my first six-month post-surgery MRI of my thigh & hip tomorrow.  Fortunately, I haven’t experienced the scanxiety I had with my last batch of tests (x-ray & ultrasound).  I’ve been too busy coming to terms wit the death of David Bowie.  Reports are now saying he had liver cancer.  You’d think all this talk of cancer & death would increase my anxiety, but no… I’m just tired!  I’ve been keeping busy working on some material for another blog I have, so perhaps that’s got a lot to do with it.

As for the MRI, this first post-surgery one is to get a baseline image, so that they have something to compare future scans to.  Hopefully, all goes smoothly & there are no nasty surprises.  Here in Canada, our medical system is primarily public, so unlike the private system, I most likely won’t get the results until later next week.  I’ll be sure to post an update then.  I also asked to get a copy of my final pathology report, which they’re going to send along with my MRI results. I’m eager to learn my final round cell count, since the >25% I was originally given was from my pre-surgery biopsy, which only examined three small pieces of the tumour.  The final pathology will be on the entire thing, so it’ll be much more accurate.

Meanwhile, I've added a few Blogger gadgets on the menu to the left to make it easy for people to subscribe or share any posts of interest on Google+.  Besides helping other sarcoma patients & helping myself not go crazier than I already am, my new goal with this blog is to also help spread awareness about this forgotten cancer.  Speaking of awareness, I also added some helpful links, as well as I few sarcoma-related blogs I've come across over the past year.

Well, that’s it for now.  Gotta be up at stupid-o’clock tomorrow to be picked up to go to the hospital!  I swear, they saved me only to try & kill me!  Scans that early should be outlawed!!! Zzzzzzzz...

The World Stood Still Today

01/11/16 - The earth stood still today when I heard the news of David Bowie's passing.  I felt like someone had punched me in the stomach. I may only have a few of his albums, but almost every single artist I love has been influenced by this man in one way or another.  For as long as I can remember, he's been a part of my music universe, directly or indirectly.  I am in total shock and disbelief. His secret 18-month battle with cancer was lost just days after his 69th birthday. Such a huge loss for music fans everywhere.  :'(

Sometimes

01/03/16 - When a song comes into your life precisely at the right moment,  as if to mirror your soul...

Something's telling me I need more than just this one week in my pajamas. So, to my friends and loved ones, please don't take it personally if I turn down more than a few invitations over the next while. I need to take some time to myself to process, well...EVERYTHING..

I've read other survivors' talk about experiencing depression & anxiety after treatment & physio finally ends.  I don't know if this is that or if my body, mind & soul just need to recover from the past 11 months.  But whatever "this" is, it's more than me just wanting to crawl into my introverted shell.  I feel like I've been in "fight mode" constantly for nearly a year now, so consider this my "time out".

Coming Undone & 2015 Farewell - Processing the Flood of Emotions When Treatment Ends

12/31/15 - Well, it’s New Year’s Eve as I write this, and boy am I glad to see the back of 2015!  When I spoke with a counsellor soon after diagnosis, she told me she often sees patients return towards the end of their treatment, and it’s only now that I’ve gained enough insight to understand why.  The past few weeks have been an emotional roller coaster, as I cope with the anxiety & fears of a possible recurrence, wondering could this be my last Christmas & if this is just the calm before the storm.  I realized the other day that I pretty much jumped straight from physiotherapy into socializing three times as much as I’d normally prefer out of fear.  Fear that it’ll come back, and with a vengeance.  Fear that funny little lump on my elbow that i never noticed before is an early sign of METS.  Fear that  little dry cough is also a sign of METS.  Fear that I won’t be around in ten years.

Adding fuel to the fire, a fellow survivor found a research-based nomogram by the Memorial Sloan Kettering Cancer Centre that shows estimated survival rates specifically for liposarcoma patients, and it appears that resident physician (the one my oncologist initially had answer my many questions because he was strapped for time) may not have been as forthright about survival rates as one would expect.  Remember, this is the resident who gave me my grade instead of my stage, plus she’s the one who told my mom & I she’d be right back but then never returned!  So, needless to say, I don’t have a lot of faith in anything she’s told me.  But back to the nomogram…  It made me realize, I probably don’t have as much time left as I was originally lead to believe.  I mean, I pretty much figured that anyway due to my high (>25%) round cell component, but it appears the survival rates for even those with as little as >5% round cells are reduced.   And while the realist in me knows I could always die of something else, like a car or a plane crash, it’s still quite daunting realizing that if nothing else takes me out, the cancer most likely will, even if it’s years down the road.  The chances of a recurrence or distant metastasis are fairly high.  So, even though I’m clear now, it could be waiting in the wings & show up in my lungs a few years from now.  I can deal with that, but  I just want the truth out of my medical team.  So, I definitely plan to show my oncologist the nomogram when I see him in March.  I realize some people wouldn’t want to know, but being single without a spouse to fall back on, I need to know how I should prepare for the future.   For instance, is retiring in 20-25 years even a realistic possibility, or should I be saving like someone in their 70’s who’s likely only got an average of 10-15 years left to live?

Another thing that’s knocked the wind out of my sails lately is “survivor’s guilt”.  Last week there was a news story about a 22-year old woman that lost the love of her life a month earlier when he passed away suddenly of unknown causes.  Meanwhile, she, herself, was dying of stage four osteosarcoma in her leg & her last wish was to make it long enough to be able to hold her yet unborn baby.  Well, she made it, as her son was born Christmas day, but that baby will never know either of his parents.  Yet here’s me with no children, other than the four-legged kind, and no significant other, yet here I sit cancer free.  Don’t get me wrong, I am grateful, but what the hell is the universe thinking???  If I wasn’t an agnostic-atheist, I’d swear the angels got our paperwork mixed up! Fortunately, I was quick to reach out for support from the online liposarcoma group I belong to, and it appears I am not alone with this paradoxical range of emotions.  This knowledge alone brings me comfort & takes the edge away from this whirlwind of ups & downs I’ve been feeling lately.

Offline, I've tried sharing a bit about these post-treatment emotions with a few close friends but it was obvious they just didn't get it.  After all, how could they?  Only those who’ve had cancer themselves can truly understand.  It's for this reason, I’ve noticed myself starting to hold back with friends and family about how I’ve been feeling - quite the opposite to when I first began my journey.  They have moved on now that I am cancer free, but for those of us who’ve faced cancer directly, “cancer free” is a bit of an oxymoron, because once it’s touched you, you’re never truly “free”.  It’s always in the back of your mind, and there isn’t a day that goes by where you don’t think about it, even if it’s just briefly.  If forever changes your views on life, for better or worse.

Speaking of holding back, I've decided to be more selective with whom I tell in person about my having had cancer.  i have lost count of the number of times I’ve heard “Oh…BUT you look good!” after telling someone I’m a cancer survivor when they ask about my leg.  I’m not a small girl, so although I lost weight due to stress & lack of appetite, I don’t look like the stereotype people have of what a cancer patient should be.  On top of that, despite loosing a lot of hair, I never did go completely bald.  It just looks like I got a major haircut.  So, to anyone reading this who’s never had cancer themselves, please note that what we as past & present cancer patients hear when you tell us “Oh…BUT you look good...” is “Oh…you don’t LOOK like you had cancer!”  Seriously people, stop & think before you open your mouth! :p  On the other hand, I’ve met a few fellow survivors in the real world by being so open, so choosing to be less so is bit of a double edged sword...

Last but not least, the thought of returning to work…or in my case, looking for a new job for the first time in over a decade after being laid off sent my anxiety so sky high that I’ve decided to take one or two more months to truly relax before starting my job search.  Sure, some people might think being on medical leave for eight months would be enough of a break, but it’s been anything but relaxing.  So, I’ve decided to be good to myself & give myself this time to properly unwind. For one thing, doing so will help me to be more resilient once I do return to work, and it’s not like I’ll ever get this kind of free time again, unless well…you know, but then that will be anything but relaxing!  So, the first week of 2016, I plan to spend in my pyjamas! :p  Then I plan to continue my endeavours of learning the ukulele & lose myself in my e-books.  I also want to work up to riding my elliptical for five hours a week.  Right now I’m at three hours a week.  I want to find that wonderful balance I once had between my introverted “me time” & hanging out with friends.  I'd also like to do a bit of soul-searching as to what I want in my next job & employer.  While I’ll likely end up in a similar line of work, I don’t want to just settle for the first thing that comes along.  Life is too short to spend it working for a company that makes you miserable.  Most importantly, I plan to enjoy this extra time with my fur-kids (my dogs), as one of them has a health condition which will eventually end his life.

Still, even once I do resume said job search, the job market right now in my province is pretty tight.  To say we’re in a recession here would be an understatement.  So, whether I like it or not, it could be quite a while before I manage to return to the workforce.  This presents another challenge, as many other survivors I’ve chatted with online say returning to work really helped.  But what if there’s no work to return to?  I might look into volunteering in the spring or summer if something still hasn’t cropped up by then or those elusive tour dates I’ve been waiting for still aren’t announced, but for now…pyjamas!  Yes, pyjamas!  ; )

*[NOTE: Post title inspired by the Placebo songs "Come Undone" & "H.K. Farewell", which can be found on their "Battle for the Sun" & self-titled debut albums respectively.]