Flashbacks ARE Real for Cancer Survivors

06/08/17 - Where has the time gone?! With three months already passed since my last round of scans & my next batch, a month away, I guess it’s time for an update!  Since my last post, between scans & the emotional effects of the past two years, I've really ramped up my efforts to rejoin the hamster wheel, and also took a bit of a social media break for an entire month before my last scans, just to focus on other things.  After the recent passing of several fellow myxoid/round cell warriors in the online support group I belong to, it was time to take a step back for my own sanity.

My visits to the sarcoma clinic are always “interesting”, so last time was no exception! Thanks to construction, we ended up taking a shuttle from the parking lot over to the cancer centre, which just happened to drop us off at the doors where radiation patients go - an entrance I hadn’t used since treatment. Now, I had heard of cancer survivors experiencing flashbacks of emotion during visits to the cancer centre but had never experienced it to this extent until this last visit. Scans are always an emotional time for any cancer survivor, but words cannot express the flood of emotions that rushed in as we walked through the waiting areas & halls of the radiation department. As if that wasn’t enough of a trip down memory lane, we then found ourselves walking through a hallway I hadn’t seen since my surgery to remove my sarcoma two years ago. To say that added to the anxiety was an understatement. On top of all that, for the first time, I had my chest x-ray at the hospital itself the same day instead of in advance offsite, so no peaking at results ahead of time! Between the flashbacks & scanxiety, it was a bit much to take, but I got through it. Fortunately, all my results were clear, so that was a huge relief! On our way out of the hospital, we walked right past the spot where I sat two years ago when I told my mom over the phone, I had cancer. Just one last dose of flashback for good measure, I suppose!

Of course, it wouldn’t be a proper meeting with my oncologist without changing SOMETHING with my scans yet again, LOL, so here is the latest! Per my request, he agreed to reinstate my abdominal ultrasounds (but not the pelvic ones, thank god, since they always had to do an internal one on me!), but he did advise, ultrasounds are not as sensitive as my annual CT scans. However, since we’d been doing them every four months, I wasn’t quite ready emotionally to give them up, so it’s really just for my own sanity that he reinstated them. The second change is due to some increasing pain I’ve had in my sciatic region/surgery area. He’s switching me from annual bone scans to a spinal MRI instead, which I have in just under a month. He said that they’re finding spinal MRIs to be more effective in finding bone mets in the spine. I’ve been doing some reading about spinal mets lately, and the research indicates that spinal mets are one of the most common sites of distant metastasis for myxoid/round cell liposarcoma patients. So, this is a good thing he’s added this to my roster of scans, but of course, since it’s new for me with higher sensitivity, cue in the increased anxiety that they’ll find something the bone scan missed. Sciatic pain asside, many liposarcoma patients with spine mets experience NO PAIN WHATSOEVER, so if your oncologist is only willing to do an MRI if you have symptoms, tell them to think again & insist they order at least one spinal MRI. The only time liposarcoma tumours cause pain is when the tumour presses against a nerve, and this is EXACTLY what happened to me with my first tumour. But to quote a fellow survivor, hopefully it’s just “creakedy old lady back" & nothing more! :)

In other news, after being laid off my job of nearly two decades while in the middle of cancer treatment two years ago, I am finally making some headway & was recently advised I was successful with one of my applications! I am so excited yet so nervous! After being off the hamster wheel for so long, it will be good to get back to some sense of normality. Now let’s just hope my next batch of scans doesn't throw a wrench into things! I busted my backside to get this job, so if my scans mess it up, I will be utterly devastated. And of course, as Murphy’s Law would have it, my favourite band just announced a whole bunch of tour dates, which I probably won’t be able to go to! Despite that, I'm practically having to hide from my computer to avoid buying tickets! Part of me wants to buy tickets just in case the new job falls through, but the other part is resisting the urge, just in case the new job or next batch of scans prevent me from going! Ugh, decisions, decisions! :p #FanGirlProblems! ;)

On a related note, one of the things I’ve missed most since being laid off is being able to help people. When I approached both the Canadian Cancer Society & CNIB to volunteer last summer, I was advised they were both undergoing restructuring & asked to check back in about six months. How ironic is that? I was laid off due to restructuring & turned away from volunteering for the same reason! So, with this year being my second birthday in remission, I decided to take matters into my own hands by raising $200 for charity - $100 for each year in remission! My goal is to achieve this by July 10th, which will hopefully be my second anniversary of being in remission! It’s through Canada Helps (registered charity, BN: 896568417RR0001), and funds will go to The Sarcoma Cancer Foundation of Canada, Wellspring, Humane Society & Canadian Chihuahua Rescue & Transport. By my birthday, I was already at 87% of my goal, so I’m almost there! :)

Another thing I've done to help spread sarcoma awareness is FINALLY purchase one of those sarcoma awareness t-shirts for both myself & my mom!  The slogan sums up so well the experience of everyone effected by sarcoma "We don't know how STRONG we are, until being strong is the ONLY choice we have!  Sarcoma awareness". 

Well, that’s all for now until my next update in July, which will include my next batch of scans - the spinal MRI, abdominal ultrasound & chest x-ray. Also, since there will be no time off for the first few months of my new job, I’m going to see what my oncologist thinks of changing my appointments/scans to every six months. Quite ironic, since I nearly had a stroke during my last appointment when he accidentally thought we were already at six month intervals! Previously, he'd suggested sticking to four-month intervals until the THREE year mark, so you can imagine the panic that set in at the thought of fewer scans at just two years. Since then, I’ve actually come around to the idea, so we shall see what he says!

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Have a sarcoma blog of your own that you'd like linked? Feel free to drop me a line or post your link in a comment below.

Update: MRI Results

01/24/17 - Yay!!! Just got my 18 month post-surgery MRI results, which read: "No evidence of residual or recurrent disease"!!!!!!!! It also said although my edema is persistent, it's improved over a year ago, so even more awesome news! Phew! So relieved! Next up as my chest x-ray in March. It was supposed to be February, but today I was informed, they've cancelled all the appointments on the day I was originally scheduled for. Ugh, not exactly thrilled about that, but what a relief it was to read those seven beautiful words! Six more months till I reach that much anticipated two-year mark!

Well, that's the good news, now for the bad news.  It seems my recent trek across the UK has taken its toll, as the report mentions an "Incidental small left knee effusion with mild synovitis", which I assume explains why I constantly feel like I have a sponge in the back & side of my knee but even more so lately. On the bright side, at least mine's not painful, because according to Dr. Google, it often can be. I've been taking it really easy upon my return home, so hopefully it won't get any worse.

Of course, this wouldn't be an update without my local healthcare system driving me crazy (again), so here's the latest! Contrary to my discussion with my oncologist last time, it appears he's axing my ultrasounds altogether, not just for my ovarian cysts, so now I'm only getting an annualCT scan instead of checking for distant metastasis (pelvis/abdomen) every four months. Considering most other major sarcoma centres recommend scanning the abdomen & pelvis every three to four months, I am needless to say not very happy about this, however, at this point, I just don't have the energy to fight. On the bright side, at least I'm still GETTING CT scans. I've read of some UK sarcoma survivors only getting Chest x-rays & no other scans, so it could be much worse. Just to clarify, this is my most up to date surveillance plan, unless of Course they go & change it on me again! Every four months: chest x-ray, annually: MRI (thigh) & CT (chest/abdomen/pelvis). I really wish they'd make up their minds, but oh well! Feeling very grateful for NED (no evidence of disease) & really looking forward to that two-year mark! Five months to go!!!


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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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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.

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.

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.

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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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.

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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"]

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...

I am the Bones You Couldn't Break - June May Have Kicked My Ass But I Won't Let It Win!

07/02/15 - It seemed innocent enough - a Sunday evening BBQ with a few close family members.  Little did we know the danger that was lurking in our midst!  Being lulled into a false sense of security with the mosquitos not being too bad yet this year, I forgot yet again to put on bug spray.  You’d think I’d have learned my lesson the week before, when something other than a mosquito - possibly a wasp - took a microscopic chunk out of my right leg.  It was red & hurt like a bitch for about four or five days but other than that, it healed up relatively quickly.  So, little did I suspect what was coming next!

This time around, we think the culprit may have been a black fly, which is apparently known to take quite the chunk out of its unsuspecting victims!  Well, I’d estimate the micro-attack happened around 10pm.  By midnight, my left leg was oozing so much clear liquid, it ran don my leg.  By 5am, there was a wide area around the bite that was red & by the following afternoon, my ankle & entire left foot were swollen, and the impact site was still seeping clear liquid! Oh, and blistering.  Don’t forget the blistering!

Now, perhaps this is normal for some people, but not for me!  Even when I’ve been stung, I’ve never had a reaction this severe, which leads me to wonder if my immune system is now super sensitive to certain bug bites post-chemo.  After all, the whole reason my surgery is taking place eight weeks after my pre-radiation chemo is to avoid complications with wound healing.  Not wanting to take any chances, I decided to call Health Link, who suggested I have a doctor look at it. So, off to a walk-in clinic we went, expecting to simply be prescribed oral antibiotics.  In hindsight, Health Link actually suggested I see my family doctor if possible, but that would’ve delayed things by a few days at least, so I opted for the walk-in.  Big mistake!  As soon as the physician heard the “C” word, he was clearly out of his comfort zone, and before we knew it, we were being referred to EMERGENCY!  Yes, Emergency….for a bug bite - albeit, a bug bite from hell, but nevertheless, a bug bite!!!  His reasoning was that they may want to do an ultrasound & put me on IV-antibiotics, which he explained would work faster, so that I could get this cleared up in time for my surgery.

So, into the vortex of the hospital from hell, we went!  Eight hours later, we emerged with stories of Buzz Lightyear & Pirate Porkchop, courtesy of a mom reading to her son across the waiting area, yet more tests and….drum roll please…ORAL ANTIBIOTICS with NO IV in sight!!!  The emergency doctor said that in this case, IV antibiotics wouldn’t have made a difference time-wise.  And after all that, they weren’t really sure if this was my system being hyper sensitive to the bite or in fact a skin infection.  By contrast, the clinic doctor who sent us into a galaxy far, far away, actually went so far to suggest it was a cellulitis, a rapidly spreading skin infection!  But they said we did the right thing, having it looked at quickly, as I do have to be careful being post-chemo & with surgery less than two weeks away.  The frustrating thing is, next time, I’ll think twice about going to a clinic or emergency & just wait however many days to see my family doctor.  Watch, that’ll be the time they’ll tell me I should’ve gone to emergency!  :p Four days of antibiotics every six hours later, it is slowly improving.  Hopefully, it won’t impact my surgery, which is now eight days away.  It’s still pretty red & swollen but it’s better than it was.

Meanwhile, earlier in the week, I got a hold of all my medical reports available to date, as I needed them for insurance purposes.  Now, remember those MRI images on CD from February I never should have looked at?  Queue in the deja-vu!  I really shouldn’t have read my reports either but just couldn’t resist.  In addition to the nodules I already knew about on my spine & ovary, they also discovered one on my intestine.  I don’t even recall them mentioning my intestine, so that totally threw me for a loop!  And then came this gem: “We are unsure of their significance….Although we are not formally classifying them as metastasis at this time, we have chosen to follow them”.  In a nutshell, they have no idea if it’s spread, so they’re playing the wait & see game.  Fast forward now to late June, where the tests reveal the same nodule on my spine but no mention of the nodule on my intestine.  They didn’t bother to check my ovary, since my ultrasound couldn’t find anything back in April.  However, I now have a new nodule that wasn’t there before on my thyroid & the word lesion came up, and yet still, they’re unsure if its significance, saying “There is no evidence of definite metastasis, which to me means, they have no idea at this point!  Still, with nodules on my spine, intestine, ovary & now thyroid, I’m needless to say, a bit worried.  Hopefully, my oncologist will clarify everything next week when we meet before my surgery.  The good news is, the alien hasn’t grown, but it’s a bit bigger than I was initially led to believe.  It turns out, it’s actually 25x13x8.7cm.

As if starring in my own personal episode of When Bugs & Aliens Attack wasn’t enough, there’s MORE!  After nearly two decades with the same company, I learned I’ll be out of a job once my medical eave is done, as the department I work in has permanently closed!  Seriously, Universe, what ARE you trying to do to me?!?!  Enough already!  Fortunately, they’re allowing me to continue my current medical leave for as long as necessary.  Once recovered from surgery, my severance pay & benefits package will last about a year.  Thank god, because finding a job when you already have a disability is hard enough.  Add in the additional complication of cancer scans every three months for the next two years & every six months for the five years following that, and well, let’s just say searching for work could be quite a challenge.  Grateful yet terrified pretty much describes how I am feeling these days!  Anyone know of a good Canadian insurance company that’ accepts cancer patients & survivors???  Trying my best not to panic.  Hopefully his chapter's end will open doors to something better & much more inspiring, a job that i can be proud of rather than being just a paycheque.

They say things happen for a reason, and sometimes I wonder if there just might be something to that.  A week before all hell broke loose job-wise, I began attending the Visualization & Relaxation sessions at Wellspring, and boy are they coming in handy!  Tried my first self-guided meditation last night while out on my deck, alongside the soothing lullabies of my water features. I fell asleep!  D’ya think it worked? ;)

Eight days till the alien gets evicted from my leg!

"I, I, I, will battle for the sun, sun, sun.
And I, I, I wont stop until I'm done, done, done.
You, you, you are getting in the way, way, way.
And I, I, I have nothing left to say, say, say.

I, I, I, I, I will brush off all the dirt, dirt, dirt, dirt, dirt, dirt, dirt.
And I, I, I, I, I will pretend it didn't hurt, hurt, hurt, hurt, hurt, hurt, hurt, hurt.
You, you, you, you, you, are a black and heavy weight, weight, weight, weight, weight, weight, weight.
And I, I, I, I, I, will not participate, pate, pate, pate, pate, pate, pate.

Dream brother, my killer, my lover.
Dream brother, my killer, my lover.

I, I, I will battle for the sun, sun, sun, sun.
Cause I, I, I, have stared down the barrel of a gun, gun, gun, gun, gun, gun, gun. No fun!
You, you, you, you, you are a cheap and nasty fake, fake, fake, fake, fake, fake, fake.
And I, I, I, I, I am the bones you couldn’t break, break, break, break, break, break, break, break!

Dream brother, my killer, my lover.
Dream brother, my killer, my lover.
Dream brother, my killer, my lover.
Dream brother, my killer, my lover.
Dream brother, my killer, my lover.
Dream brother, my killer, my lover.

I, I, I will battle for the sun.”

- “Battle for the Sun” by Placebo

*[NOTE - Post title also inspired by Placebo’s song “Battle for the Sun”, which can be found on their 2009 album of the same name.]

A Million Little Pieces Come Together - Results Day #2.

04/20/15 - After much waiting & a week's delay, I finally got my consultation to discuss the results from all the many, many tests I've had over the past two months, especially those over the past two weeks.  To my relief, the news was mostly good, though I'm not completely out of the woods yet.  There was so much information covered today, there's no way I'll remember it all to share here.  They estimated the consultation would take approximately two hours - we were at the hospital for nearly FIVE!   That being said, here are some of the more important highlights. :)

First, I have a stage three 25x12x8cm tumour, which currently does not appear to have metastasized. [EDIT: I later learned speaking directly to my oncologist that the resident doctor screwed up, and I was actually stage 2B, GRADE 3, 25x13x8cm!]  However, indeterminate spots WERE found in the bones of my abdomen & spine, plus another unusual spot was found on one of my ovaries.  Now, before you panic - I sure did! - the abnormalities found in the bones of my abdomen & spine can also be found in people who do NOT have & have NEVER had cancer, BUT due to the fact that I do have cancer, they have to be vigilant.  So, for now, my specialist is not overly concerned but will continually monitor them.  As for the ovary, that's another story.  Yep, here comes one more test (an ultrasound) to ensure it's nothing to worry bout.  It's possible it could be related to surgery I had 10 years ago, so it may not be significant, but again, better safe than sorry.  So, that'll be checked out prior to starting my treatment, which has been further delayed.  Looks like it'll probably be another two weeks now.  I'll also need to go in for a more in-depth radiation planning session, where they'll determine the best way to go about the radiation, such as position of my legs, etc.

So, to better cope with all the endless waiting, stress & yet more delays, I've decided to take advantage of the hospital's individual & group counselling services, in addition to the closely-matched peer support volunteer available through the Canadian Cancer Society.  They also gave me info on courses patients can take through our local cancer centre.  Haven't had a chance to look  through them yet, but once I have, I'll share more info if they seem useful.  Speaking of which, one very useful service they have on offer is a volunteer driver service to get patients to & from appointments.  It's not only free but it's more flexible than the city's shared ride service for people with disabilities, as you don't have to worry about missing your ride home, should your appointment run longer than expected.

In addition to meeting with my orthopaedic oncologist again, I also met my radiologist for the first time, along with the respective resident-physicians for both specialists.  Think of the residents as  extensions of your primary medical team who fill in the gaps when your primary specialists have other patients to attend to, etc.  It was here where I started to get more answers re: treatment & its short-term & long-term side effects.  Now, keep in mind, everyone's different, and not everyone gets the same dose of chemo or radiation, but this is what they're expecting in my case...

Chemo therapy - Despite the low dose & short duration I'll he receiving, there's still an 80% chance I'll lose my hair but only on top of my head.  It is rare for patients to lose ALL their hair (eyebrows, lashes, etc.), although it can happen occasionally.  Despite being well aware hair loss was likely, the high percentage rate sure threw me for a loop!  They also expect fatigue to be an issue, in addition to bruising more easily, risk of infection, nausea,  change in appetite & taste.

Radiation - One of the most significant side effects will be skin soreness, irritation & peeling comparable to that of a sunburn....   My skin will also become darker in colour & become tighter.  Other side effects are likely include fatigue & mouth sores.  Due to the many changes to the skin, they recommend regularly using powder, such as baby powder, in addition to a medically prescribed cream.  Fortunately, they don't anticipate blistering in my case.  Here's hoping they're right!  Given the large size of my tumour, feeling as if I have a sunburn on the posterior & side of my thigh will be more than enough to deal with, thank you very much!

Long-term side effects to keep in mind after treatment will be an increased risk of fracture years down the road due to the tumour removal occurring so close to my bone, as well as the possibility of secondary tumours due to the radiation.  They said these secondary tumours occur in 25% of the individuals, and if cancer were to reoccur, it would most likely be in the same site as my original cancer.  For the first two years once I'm cancer-free, I'll have to be checked every three months.  Then for each of the five years thereafter, it'll be every six months.  While this sounds like a lot, I'm being assured that my work's insurance company will be required to consider this all as part of my original claim, and thus I won't lose a bunch of sick days over all those appointments. :)

Recovery time will largely depend on how well my tumour responds to radiation & how the surgery goes.  It could take anywhere from one to three months to recuperate from the surgery alone.  It is up in the air how much physio therapy will be required, as this will be determined by how much surrounding tissue they'll end up removing.  What I do know, is regardless of this, a large chunk will be removed from my leg, and it'll look as though someone took a bite out it.  Fittingly, the in scission will be large.  They are going to do everything they can to preserve the nerves & muscle surrounding the area but it's impossible to say that this point what the outcome will be.  That being said, I did ask about my eventual ability to once again stand for long periods of time at, say...a general admission concert gig.  Come on, Y'KNOW this question had to be forthcoming!  ;)  The resident physician said although the muscles in that leg will always be weaker, chances were promising, but of course, no guarantees.  Only time will tell!  Better start compiling my physio-workout music playlist now, haha!  2016 20th Anniversary Tour, here I come!!!  Even if I have to waddle like a duck, I'll be there, someway, somehow!!! ;-)

*[NOTE: Post title inspired by Placebo's song "A Million Little Pieces" off their 2013 album, "Loud Like Love".]