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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"Carve Your Lyrics Into My Arms" - Coping with the Power of Music

01/23/17 - Something strange happened the week preceding my last MRI scan.  Finally, after a year & a half of much debate & stress over how often my MRI’s should be scheduled, I found myself feeling surprisingly relaxed, whereas normally a healthy dose of “scanxiety” would kick in.  Perhaps it was due to the fact I’d just returned from my fangirl trip of a lifetime, or perhaps it was due to the fact I’d been sick for nearly two months & was simply ecstatic to finally be over what I now believe was the RSV virus (a severe respiratory infection, often mistaken for a heavy cold). Whatever the reason, for the first time in the year & a half since this medical rollercoaster began, I just felt calm.  Could it be that I am finally getting the hang of this being a cancer survivor thing?  Even when I learned receipt of my results would be delayed due to the absence of my oncologist’s administrative assistant, I wasn’t phased.  My realistic self rationalized, if there was a problem, they would’ve had somebody else call me into the sarcoma clinic, so surely they must be fine.  Right?  Right!  I hope…

Well, that was all three weeks ago, and alas, it was a good run while it lasted, but now that the assistant is back at work today, I can feel this doubts creeping in ever so slightly, although much less than with previous scans.  I don’t think it’ll ever go away completely if I’m honest, but it’s been nice having that peace of mind.

Meanwhile, my fangirl trip of a lifetime was everything I’d dreamed & more!  The trip was to see my favourite band Placebo for their 20th anniversary tour all over the UK & Ireland, but for me it meant so much more.  Not only have I been a fan of the band for 20 years, there were times during my battle with sarcoma when the only time I felt true comfort was while lost in the music of Placebo.  Even once I progressed to five months of physiotherapy, Placebo was my soundtrack every wobble along the way.  In fact, I still have my Placebo inspiration board up on my elliptical.  In addition to photos of the band from past shows, it also includes a marquee of the band’s name in lights & a photo of me with friends on the barrier at…you guessed it…another Placebo concert!  Long story short, they were instrumental in getting me through one of the most difficult times of my life.  Now not only have I come out the other side, but I made it through the trip that meant so very much to me, and I even got my second chance to meet the man who is positively my most favourite human ever to grace a stage.  As if that wasn’t fantastic enough, he actually remembered me from when we’d met two years earlier, and he remember where I’m from!  Needless to say, I was & still am on cloud nine, and ready to deal with whatever life throws at me.

Now here I am in 2017 still looking for my next big break on the hamster wheel, praying for “NED” (no evidence of disease), and a little uncertain of the future as a result, BUT I am here I made it!  I don’t know what the future holds, but I’ve learned I'm a lot stronger than I ever could’ve thought.

So, now I’m off to bed to try to get some sleep.  Hopefully, I’ll wake up to good news!

01/24/17 - Well, yesterday has come & gone, and the waiting continues…. Waiting, waiting, waiting…always waiting!  *Deep breath*. *Looks down at the Placebo lyrics etched in my skin*…”Breathe, breathe…Believe, believe…"

*NOTE: Title inspired by a line from Placebo's song "Every You Every Me" from Placebo's 1998 album "Without You I'm Nothing".

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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

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

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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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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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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.

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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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!

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.]

"Pity Party" of NONE! I'm a Fighter & Survivor, NEVER a "Victim"!

10/30/15 - Where has the time gone!  I’ve been meaning to post here for ages now but have been so busy concentrating on my recovery that, before I knew it, three months had passed!  Apparently, some of you (Wow, there’s actually more than three people reading this? LOL! ;) :p) have been wondering what happened to me, so I guess an update is in order!  But first, a little something I need to get off my chest...

Call us fighters, survivors or even warriors but NEVER call us “victims”!  THIS was what came to mind the other day, as I read a post on Facebook that, while penned with the best of intentions, was clearly written by someone who’s never had cancer themselves.  Everyone’s experience is different, and although not all of us are lucky enough to win the battle, we are NOT “victims” to be pitied!  We are just everyday people like the rest of you who just happen to have some extra challenges to deal with!  It’s posts like that & the  cringe-worthy reaction I received from one of my non-cancer related specialists that really give me pause for thought.  During the past year, I’ve been commended over & over again by others, including friends whose lives were previously touched by cancer, for being so open about my personal journey.  One friend spoke of feeling in the dark when another of her loved ones was much less open about their cancer experience - a stark contrast to my approach.  I never understood why anyone would want to hide such a significant aspect of their life from those around them, especially close friends & family.  But now I get it.  I really do.  But that was just never a choice for me.  For my own sanity, I needed to write this journal & reach out to those around me, because quite frankly, I was scared shitless & would’ve gone insane if I’d held it all in.

As one of the many medical professionals once said to me this past year, I am an information seeker, so burying my head in the sand & pretending it wasn’t happening just wasn’t an option, and talking about it with others actually helped me deal with things, because no matter what you do, it’s always on your mind, even if it’s lying dormant for a while.  There isn’t a day that you don’t think about it at some point.  And even once you’re told you’re cancer-free, it’s always there.  As an announcer on CTV News recently stated while reporting on Rob Ford’s suspected recurrence of pleomorphic liposarcoma, anyone who’s survived cancer will tell you, the biggest fear is that it will come back.  Seeing Rob Ford hold back tears as he spoke of how far he’d come only to have to start “it” all over again really struck a chord with me, and I’m sure every other cancer survivor out there.  My heart truly goes out to him & his loved ones.

That being said, I have my first post-surgery chest x-ray in two days, followed by a an appointment the following week to discuss the results with my oncologist to find out whether or not I'm still cancer free or if it’s spread to the lining of my lungs or heart. I also want to request an ultrasound or CT scan, as I’ve noticed an imbalance in the way my body feels around my ribs on one side.  Hopefully, it’s just me being overly paranoid about the slightest idiosyncrasy, but we all know what happened the last time I ignored something like that, so I’m not going to ignore it this time!  Still, here’s hoping my news will be happier than Mr. Ford’s.  To say I am experiencing “scanxiety” right now would be an understatement.  But I’d better get used to it.  Got another seven years of this “fun" to come every three to six months, and even once that’s over, I’ll need to have tests for the rest of my life, but hey, at least I am here to have the scans in the first place, so it could be worse!

Whew!  Now that I got that out of my system, here’s an update on the last three months!

In early August, nearly a month after surgery, my stitches finally came out & I was discharged from home care.  Thankfully, that wasn’t nearly as painful as when my foot-long drain was pulled a week earlier!  However, the nurse MISSED a few, which actually impeded wound healing, so eventually in early October, I took matters into my own hands & managed to pry the remaining sutures loose, cutting them out on my own!  Keep in mind, that these stitches were on the back of my thigh, so lets just say I had to contort myself into some rather interesting positions to get the job done!  It sure was worth the effort, though!  The extra sensitive trouble spot quickly expedited healing from that point on!  Sure, I could’ve returned to the hospital to get them to do it, but my thought on that was, I already went once & they buggered it up then, “If you want something done right, do it yourself!"  So, I did just that, being sure to thoroughly sanitize before, during & after!

Finally having the stitches removed allowed me to progress into off-site physio in mid-August. It wasn’t long before those six exercises  prescribed in hospital ballooned and the number keeps growing to this day!  Currently, at the time of writing, I'm up to 23 daily exercises at home that take over an hour to complete, in addition to 2 hours & 20 minutes of recumbent bike throughout the week, one to two hours of elliptical each week, walking my dogs 4-5 times a week and a few other exercises limited to the actual physio clinic due to the fact I don’t have the equipment at home.  I was also encouraged to purchase a yoga ball & resistance band as part of my physio plan, which have really helped.  The other part of my physio involves my therapist working to break down the scar tissue, which can be quite painful but will reduce chronic pain in the long run.  I swear, my theme song right now should be “It’s the Physio that Never Ends”, LOL! ;)  Fortunately, the end is near, as I’ve only got three more weeks of off-site physio, followed by a month break before my final one or two sessions to tie up any loose ends.  Oh, I can’t wait!!!  While I’ll likely still need to continue with at home physio, I’m really looking forward to getting my life back, and the end of formalized sessions will be a step in that direction!

How does one stay motivated to do all that physio, you ask?  Well, let me tell you, it’s not easy!  The first four months were great - I did nearly every single exercise religiously every single day.  But by October, I was starting to feel a little challenged in the inspiration department!  So, what I did was create an inspiration board with pictures of my favourite band & a photo of me with friends at one of said band’s shows.  I rode my elliptical for an hour straight the other day with the inspiration board propped up in front of me, so I guess you could say it’s working!  :)

All this hard work has really paid off, though.  Gone are the crutches & walker, all the rental equipment/aides have been returned & I have lost 12 lbs since surgery without even trying!  And although I still walk like a duck, I’ve come a LONG way in the past three months!  I can even touch my toes with a bit of bending at the knees, the neuropathy & other nerve pains have improved (though they're not gone entirely) and to my delight, I can once again get down on the floor (very carefully, I might add!) to hang out with my beloved fur-babies!  <3   My next goal is to one day be able to run without looking like a drunken weeble-wobble, in hopes of making it near the front at all those Placebo gigs I’ll be attending next year!  Yes, a girl’s gotta have her priorities!  It’s all about the music!  And the Molko!  Don’t forget the Molko!  ;) <3

Speaking of which (music that is!), September saw me embark on my endeavour to reconnect with my musical brain, as I began taking part in Wellspring’s music programs for those touched by cancer.  In particular, I started both the ukulele class & drumming circle I’d missed during summer, and I must say I’m really enjoying them!  I have a whole new level of respect & admiration for anyone talented enough to play a stringed instrument & do it WELL!  Drumming circle is my favourite, though, because it doesn’t matter about all the music theory I’ve forgotten over the years.  Anyone can do it & you don’t have to fight with your fingers trying to get the hang of chords!  You just lose yourself in the drums & it’s simply amazing!  One thing we do each week is play specifically for two members of the circle, surrounding them as they lay down on chairs in the middle of the circle.  As we play, we focus our energies on whatever they want the healing-focus on.  For instance, it could be something as simple as finding peace or it could be something more serious such as chronic pain or a recurrence.  I was brave enough to volunteer to go into the circle during my first time, and it was such a surreal feeling hearing the music move around me as the others walk around playing various percussion instruments!  And the healing touch at the end was, well, a nice touch - and completely optional, I might add. :)  Music has been found by scientists to have great healing power, and I believe it.  Amongst other things, it reduces stress hormones & depression by creating a natural high with the production of dopamine, which also helps increase energy.  It’s no wonder there are so many music programs at Wellspring. :)

Still on the topic of Wellspring, I also finally got to take part in that laughter yoga I’d been wanting to try for years!  Although, I only did one session due to its early morning start-time, I highly recommend EVERYONE try it at least once in their lifetime!  There’s actually a science behind it, as well.  Around 1995, it was invented by a doctor in India who felt his cancer & stroke patients’ lives were just too stressful & in need of more joy.  Thus, laughter yoga was born!  But it’s not just all jokes & smiles.  Laughing, whether real or fake, provides the body with increased oxygen, which boosts both energy & immunity.  The instructor even went so far as to suggest that a body with increased oxygen is inhospitable to cancer cells, so there just might be something to that old adage, “laughter is the best medicine”!

[NOTE: Post title inspired by the bonus track "Pity Party (of One)" by Placebo from their 2013 album "Loud Like Love"]

Did I Forget to Take My Meds?!?! Finally Awake Enough to Write a Post-Surgery Update! :p

07/30/15 - Wow, where has the time gone?  It’ll be two weeks tomorrow that I’ll have arrived home from hospital!  Been wanting to write in here but am so fatigued most of the time that I just never seem to get around to it.  Feeling unusually awake right now, so I’m grabbing the chance while it’s here before that pesky urge to nap creeps up on me yet again!  Please bare with me if I’m not as eloquent as I usually am!  I’m on  five different meds right now, down from six, as one ended yesterday!  Anyway, hopefully I don’t babble too much & this will actually make some sort of sense! :p

So, my surgery went well three weeks ago, despite taking twice as long as expected & being very difficult & complex due to my sarcoma being wrapped around a nerve. Remember my friend’s hypothesis that my discomfort was due to my sciatic nerve?  She wasn’t far off the mark, except this was obviously more than your average case of sciatica!  The way my oncologist described it was, they had to “peal it (the tumour) like a banana” in order to preserve the nerve, but luckily they were able to do that in one piece, so as to lesson the likelihood of the cancer spreading.

As I regained consciousness, I awoke to 30 stitches running from my buttock to the back of my knee, two drains (knee & backside), a lot of swelling (edema) in my leg (foot included), a sizeable chunk of my hamstring muscle missing, neuropathy in my left foot & some awesome painkillers, pain pump included!  Oh, and no more evil alien living inside my thigh!!!  :)

They actually warned me the neuropathy (nerve damage) may occur & may or may not go away with time, but so far there’s been no improvement, so I’m just learning to live with it.  So far, it’s more uncomfortable than it is painful, though once in a while, the irritation borderlines on pain.  The best way I can describe it is if part of your foot was half a asleep…yet the pins & needles feeling is most pronounced when something is putting pressure on my foot.  Even something as light at bed sheets is annoying!  God help me when winter coms & I have to wear socks!!!  But, like I said, you just get used to it.  Other than that, my leg is extremely swollen right now.  My oncologist says the edema will take roughly six months to dissipate, but my recovery & medical leave will be about three more months if all goes well.

As for the pain in my leg, it has its moments, but the meds have been working quite well to keep that “bubble” going, where I don’t have too much pain while not moving.  However, I do get sudden shots of pain while walking (especially long distances), and sitting for long periods of time is very uncomfortable.  I also have to sit on a pillow ALL the time, placed on a firm surface for stability & to minimize the irritation on my drain site & stitches.  The larger drain site on my backside has been the most significant source of pain so far.  More on that later!  Meanwhile, parts of my leg have significantly reduced sensation, whereas other parts of very sensitive!  I think of it as a mixed blessing, as there are many sensations right  now I have no desire to experience!  :p  Probably the oddest sensation I do have right now, though, is the feeling as if someone stuck a bunch of cotton candy in the back of my leg.  Not sure if that’s the edema, nerve damage or both, but the inside of my leg just feels like a giant sponge.  Currently, I’m barely able to bend my knee, nor can I bend over.  My remaining muscle is also very weak, so I always need to grab onto something to stand up, sit down or climb stairs. As for nerve pain, I do get occasional discomfort in my back, which I’ve noticed is increasing over the past few days since i’ve begun reducing the Tylenol 3’s with Codeine.  This could also be related to the fact I tense up when my drain site gets irritated.  Let’s just hope it’s not a sign of things to come!!!

To my shock & amazement, they actually had me up & walking the day after surgery with the aid of a walker!  I thought they were crazy, but apparently they do this to everybody!  It’s worth noting, it took two people to get me out of bed for several days after surgery, but eventually, I graduated to one person & then eventually was able to do it on my own with just the aid of an ingenious tool, courtesy of the hospital’s physio team - a foot loop that allowed me to support my leg& hoist it along while I dragged the rest of me out of bed with the aid of the bed-rails.  Getting in & out of bed actually hurt more than the walking did.  When I say walking, though, it’s more like waddling!  “Quack, quack” <incert duck sound here>!  :p  They started me off with a walker, which I still use now for longer distances, since I can barely bend me knee & am unable to bend over.  In other words, if I fall, I’m not getting back up, so hence the walker.  Being visually impaired on top of all that, adds even more reason to use the walker, especially while out of the house.  About five days after surgery, they also taught me how to use the crutches, which are less steady, but are necessary for stairs, since a walker won’t fit most standard-sized stairs, and if I’m leaving the house alone, I can’t exactly take the walker with me.  But if I’m getting a ride somewhere & we’re going somewhere that’s accessible (has a ramp or elevator), I’ll always choose the walker over the crutches.  It’s also much faster than the crutches!  Like about twice as fast!  But my house has a LOT of stairs, so the crutches were a must have.  I actually bought them outright but am just renting the walker. Hopefully, I’ll eventually graduate to just a walking stick (or in my case a support write cane for the visually impaired) or better yet not need any extra support at all.  But time will tell on that one.

Other tools that have come into my life post-surgery include: an extra long-armed reacher, a sock-aid, extra long shoe horn, bath transfer bench, commode, two shower grab bars, the addition of proper physical railings on one of my stairways that previously only had wall carvings that functioned as a railing, and as previously mentioned, that handy-dandy foot loop, walker, crutches & lots of lots of pillows!  Also bought a recliner, to help combat  the edema, rather than having to pile a mountain of pillows all the time on the bed or couch.  This way I can watch TV (if I manage to stay awake!) & battle the edema at the same time. :)

Now back to those darn drains.  The first one (near my knee) was small & a piece of cake to have removed.  The second one (on my backside), on the other hand, was the complete opposite!  It was nearly a foot long & to say its removal was painful was an understatement!  On a scale of 1-10 for pain it was a 20.  It was so bad, I actually sobbed like a baby when they finally took it out, which by the way, got delayed because my leg had so much drainage.  But finally, they took out out 17 days after surgery.  It was also on that day that I learned, I am officially cancer free!!!  The toxicology report came back negative & showed clear margins!!!  :)  So, it was a bitter sweet day!  But the pain of that drain was all worth it if it means all remnants of that evil alien are gone from my body!  :)

It was weird, though.  I felt like I should be celebrating, but as mentioned, I am so tired ALL the time, as is my poor mom who’s been temporarily living with me while I recover, there’s just no energy left.  And there’s also the knowledge that recurrence could happen & that I have a long three months ahead of me.  But I am grateful.  Earlier today, I learned that a long-time co-worker of mine who worked at the same place I did for many years passed away on that same day I learned I was cancer free.  She was only about 10-15 years older than me at most, and had chronic health issues of her own.  So, news of her passing hit me surprisingly hard.  I am just so thankful, though, that the universe has decided to give me more time.  

Next on the agenda is to hopefully have all my stitches removed next week, though part of my incision site has been slower to heel due to the chemo & radiation therapies, but it seems to finally be coming along, as I just graduated from having daily home care to having homecare every second day, so crossing fingers all goes according to plan.  They’re also going to give me a referral for physio next week, so hopefully that’ll help combat those silly sponges that seem to have taken up residence where the evil alien once lived in my leg!  The at-home stretches have helped a bit but still have a long way to go!

But on that note, my drain site is really pissed off at me now, so I’m getting out of this chair, which by the way, is a lawn chair with lots of pillows!  Another ingenious adaptation we’ve come up with in lieu of my killer computer chair, which would likely roll away on me while trying to get in or out of it! Wheels on walker = good, wheels on computer chair = very bad, LOL!!!  :p

*[NOTE - The title of this post is loosely inspired by Placebo's song "Meds" from their album of the same name, released in 2006.]

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

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

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

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

Bulletproof Patient - Chemo, Radiation & More!

06/12/15 - It’s been a while since my last update, so I figured it’s about time I put in an appearance here.

Feeling rather emotional today, having finally made it out to Wellspring to check out two of their many programs. During the music jam, I came *this* close to breaking down sobbing during "Puff the Magic Dragon" of all things.  That song brought me to tears as a child, so perhaps it's not that much of a stretch.  However, I think the emotion driving today's tears ran much deeper, sitting in a room with a bunch of strangers, all of us with cancer, singing about friendship, loss & grief.  And you thought it was just a nursery rhyme?  Think again!  That song is heartbreaking!  Even though prognosis is often good for most of us with myxoid liposarcoma in the leg, it still unavoidably makes you confront your mortality - consciously or not.  Singing about little Jackie Paper not coming ‘round anymore hit home like a ton of bricks - and unexpectedly so.  Thank god, I just barely managed to avoid a complete breakdown, *phew*!!!  Something tells me the tunes in that songbook (which is probably 2 to 3 inches thick, by the way!), weren't chosen at random.  There are quite a few lyrics that jumped out at me - from living in the moment to finding strength to look outside yourself & everything else in between.  It's funny how music never ceases to drag emotions out of you, even those buried deep down.  You know, the ones you THOUGHT you were done with?

That said, the acoustic sing-along ended just in time for me to pull myself together.  I then moved on to the women's group, where we spent two hours sharing our own personal cancer experiences & information.  Never thought it was possible to feel grateful & terrified simultaneously, but that was me today.  The group is a mixed group, meaning it’s not limited to just one type of cancer patient.  Thank god, because if it was only my type of cancer, there’d be no one there but me!  What really hit me were the brave stories from those who started out with one kind of cancer only to develop yet another type of cancer after beating the first one.  Two of them in particular, came across as incredibly brave & positive in spite of  being to hell & back not once but twice  & even three times.  Hearing stories like that really makes me wonder, though.  I already know about the chance I could have a reoccurrence in that same leg due to radiation treatment, and I already know about the chance it could metastasize to my lungs or abdomen, but what I'm really curious about now is the likelihood of developing another seemingly unrelated type of cancer later down the road.  From what I’ve observed, it seems to happen quite a lot to people whose cancer originates in an organ.  No idea if liposarcoma survivors are equally or less prone to this same pattern.  I shall have to inquire about that when I meet with my oncologist at month’s end.

Other topics that arose were the issues of being released from hospital too soon & the complications brought on by delays in home care.  Thankfully, I have a wonderful mom who's going to stay with me after my surgery  in a month till I've recovered well enough to manage stairs, but she can only take so much time off work, which means I'll probably need to get home care, so this part of the discussion was particularly insightful.  The removal of the alien in my leg takes place exactly four weeks from today.  The facilitator of the women's group suggested I speak to the hospital NOW to request a social worker to help organize home care well in advance of surgery, so although today was emotionally draining, I'm glad I went even just for that one peace of advice alone.  When I asked my oncologist about home care, he just said the hospital would organize that once I'm on the ward.  Sounds like he may be unaware that some patients are being sent home before they're ready.  Hopefully, I won't be one of them!  Perhaps I should invest in a pair of handcuffs to chain myself to the bed if they try pull a stunt like that on me!  :p

Thank the universe for my dogs who gave me lots of kisses when I returned home.  Nothing beats the warmth of canine  cuddles!  <3

Whew!  Okay, now that I’ve gotten all that off my chest, here’s an update on my chemo & radiation therapies.  After three months of stress & worry over possible side effects, I feel I’ve been extremely lucky.  Unlike one of my hospital roommates who was on the same type of chemo for a similar type of sarcoma, it took two days before I began to experience nausea, which then lasted five days.  Sweets, such as chocolate, began to taste weird & spicy food became turbo charged overnight, but thankfully NO iron-tasting food!!!  It took about a week before I resumed normal eating, though I use that term loosely, since to this day, I still don’t get normal hunger signals like I did before the cancer.  I suspect this is due to the stress response that kicked in when this medical roller coaster began back in February.  Still, it could’ve been a lot worse!  By contrast, my chemo buddy was projectile vomiting from day one & felt miserable the entire time.  You know how people experience survivor’s guilt?  I actually felt chemo guilt, because my response to the exact same treatment was so different from her’s!  Before my much milder nausea kicked in, my biggest challenge was frequent fatigue, which continued during & after, my radiation sessions.  Besides that, I experienced weakness & increased soreness within my leg muscle, skin tenderness & a bit of pealing during & after radiation - the fatigue being the most significant side effect.  Some days I would start out feeling relatively ok but was absolutely exhausted after the radiation session to the point where I’d fall asleep sitting up on the couch in the middle of the day.  Other days I was just tired all the time regardless of how much sleep I got or whether or not I had a session.  But once again, I’ve been relatively lucky.  One day while waiting to go into radiation, I overheard a crying boy who was also undergoing radiation treatments, saying “I'd rather die than go through this again”.  Cancer is a challenge for everyone who goes through but hearing those words come from a child’s mouth really throws you.

Chemo, which was supposed to last three days, ended up stretching to almost four days, due to delays on the day one.  First, the PICCS line insertion ended up taking not one but THREE hours!  The line decided to go UP into my neck instead of down to the large artery near my heart!  As they flushed my system trying to figure out its location, I could hear water rushing through my ear!  Note, there was nothing actually inserted into my ear, so to say this was a surreal feeling would be an understatement!  And every time they flushed me, I could taste the saltwater of the saline solution!   Several flushes & x-rays later, they finally had it where they wanted, so I was taken upstairs to settle into my room & wait…and wait some more.  It was five hours AFTER the PICCS line was complete before chemo even started!  But it wasn’t all bad.  They made me do a funny “dance” before each x-ray, presumably to…  Well, you know, I have no clue why but I’m sure there’s some scientific or medical reason for it!  I just wanted to burst into a chorus of “Y…M…C….A!”, LOL!  :p  Good thing I refrained, though.  My PICCS insertion is STILL healing a month later & I still have bruising around the insertion point.  They sure weren’t kidding when they said chemo can effect wound healing.

Speaking of dancing, during my sixth radiation session, I discover I had the option to have my OWN music playing while undergoing treatments!  Call me easily amused, but I was absolutely ecstatic by this news, because of course, music makes everything better!  So, what better companion to join in my “battle for the sun” visualizations than the melodies of Placebo themselves for my last three sessions!  :D I’m sure they must’ve thought I was nuts, as I laid there tapping my foot & singing along to the tunes in the middle of treatment!  :p  For those wondering, the radiation treatments themselves don’t actually hurt during the session.  It’s the buildup in your system that eventually causes side effects.  Hell, getting off that hard treatment bed hurt more than the session itself!  They had a really neat faux skylight to help you relax, though, that made it look as though you’re looking up at blue sky, trees & fluffy white clouds.  I kept threatening to take it home with me!  Seriously, I wonder how much those cost!

So, two weeks have passed since the end of treatments.  I still have a brain like a civ, concentration isn’t what it once was & fatigue levels are up & down but better than what they were.  My anxiety levels are starting to creep back up, though, as my surgery date looms ever closer, so I’m trying to keep things as stress free as possible.  And then there’s the hair loss, which took longer than expected but alas, it’s happening.  The week after radiation ended, I noticed more & more single strands coming out.  However, by two weeks after radiation, it looked like I lost half a sheep just from what fell out in the mornings alone!  Have you been wanting to take up knitting or perhaps stock up on wool for that winter sweater you've always wanted?! Look no further, just give me a few more weeks & I'll have all the wool you need, LOL!  Oddly enough, I was more amused than distressed by the miniature sheep in my garbage bin.  What freaks me out more are my lop-sided eyebrows!  As they said might happen, I’ve lost the end of one of my eyebrows!  It looks totally weird to me, but that’s probably because I’m more self-conscious of it.  My mom forgot all about it when she came to visit, so it’s nice that it’s less noticeable to others. 

Now that chemo & radiation are done & my energy is getting better, I am finally taking advantage of the local support programs, which I wouldn’t be able to do while working.  Thankfully, my insurance company is allowing me to continue to be off until after I’ve recovered from surgery.  I also plan to use the time to get organized before surgery, both at home as well as with the hospital, and complete the insurance forms I just haven’t had the energy to deal with.  Hopefully, I’ll tackle the latter over the next week or two!  I also have more diagnostic tests coming up, as well asa a pre-surgery consultation with y oncologist to learn how well the chemo & radiation worked. Although radiation may not actually shrink the tumour, it’s supposed to “clean up” the edges, so that my oncologist can get cleaner margins while removing the tumour, thus reducing the amount of healthy tissue that has to be cut away in order to get all the cancer.

And on that lovely note, that’s it from me for now!  I’ll probably post one more update before surgery, which takes place in early July.  I don't know if I"m just lucky or stronger than I thought, but whatever the case, I hope it continues into the next phase of my treatment & recovery!  After all, what doesn't kill you makes you stronger, right?

PS - Many thanks to all the volunteers & participants at Wellspring!  Although today was very emotional for me, it's nice to finally be able to talk to people in person who truly understand.  I truly appreciate your time, support & bravery.  I feel very blessed to have found this organization. :)  And much love & hugs to all my friends & family who've been there for me ove the past few months!  I couldn't have gotten through them without you!

*[NOTE: Title of this post was inspired by Placebo's "Bulletproof Cupid" off their 2003 album, "Sleeping With Ghosts".]

Disassociative - In a Crowd But Still Alone

05/07/15 - Being a self proclaimed realist - at times, perhaps even a pessimist - it has come as quite a surprise to me over the past month how upbeat I seem to come across as to people, and how my light, energy & sense of humour apparently shine through.  I've lost count of the number of times I've been told how positive & strong a person I am.  It's to the point where I'm almost starting to believe it myself.  Almost.  Perhaps it is for that reason, I hesitate to post what comes next. When I originally started this blog, it was not only meant as a form of catharsis for myself but also a way to help others walking a similar path.  However, with any journey there are ups AND downs, and with myxoid liposarcoma being so rare, there are a LOT of downs.  I want those fighting this disease to know there are others in the same boat, so I'm left with no choice but to bare my soul in the words that follow, because this needs to be said.

Having read the struggles of other liposarcoma fighters & survivors, I see I'm not alone in that this disease is never far from our thoughts, no matter how hard we try to fight it & no matter how brave others think we are.  Twice now this past week, I've noticed that while spending time with family &/or friends, I feel fine while we're all together, but as soon as everyone leaves, suddenly a profound feeling of sadness comes over me.  Upon a bit of reflection, the only explanation I can come up with is that, both literally & figuratively, their lives have gone on, whereas mine's been stuck in an inescapable limbo.  It's always with me & although I have occasional moments where I manage to briefly free my mind, it's never far off... I feel like my world's been on hold for a month since getting my diagnosis as I go from one scan & doctor appointment to another.  Rarely with those close to me, am I lost for words, but I'm starting to get that way, because lately I see doctors & nurses more often than I see anyone else. Also, with just four "days of freedom" left before starting my first ever round of chemo & radiation, things are starting to get real & fast. My life was already changed forever a month ago but I feel like it's *really* never going to be the same after treatments begin...  Ironically, it was exactly one month ago today that I got my diagnosis.

Yesterday, I joined a local cancer support organization called Wellspring, which offers a ton of completely free wellness programs for those facing any type of cancer, so hopefully this will help combat these feelings of isolation.  But first, I must get through the next 2.5 weeks of treatments.  Hoping this will be the first and last time I go through this, but with recurrence being a very real possibility within my lifetime, I'm bracing myself in the knowledge this may only be the beginning... Scans every two (or three?) months for the next two years, then every six months for five years.  This isn't going anyway any time soon, even if I do win round one of the battle.

It's been a while since I posted a song of the day, and this seems like a perfect time to bring that back.  Believe it or not, for once it's not  a Placebo song but rather my other musical favourite, Marilyn Manson!  :)  Can't believe in three years, this song will be 20 years old, but it describes my emotions  perfectly as though it was just written yesterday.

Oops, well, so much for today's post being a Placebo-free zone!!!  Tthat lasted all of two seconds, LOL!  I'm actually going to post two songs of the day, the second being "One of a Kind" by Placebo from their 2006 album "Meds".  Dear Universe, when I had these lyrics tattooed on my body just four days before being diagnosed, having this very rare cancer wasn't exactly what I had in mind!  :p

*[NOTE: The title of today's post was inspired by lyrics from two songs: "Disassociative" by Marilyn Manson, which can be found on their 1998 album, "Mechanical Animals", and "One of a Kind" by Placebo off their 2006 "Meds" album.]