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!

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.

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.

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.

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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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.

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"]

Pictures

04/27/15 - My radiation CT scan & planning (see lower right photo below) were completed in half the time anticipated, only took an hour!  :)  It was relatively painless, apart from the horribly hard medical table I had to lay on (Oh, my poor spine!).  They had this beanbag mould thing filled with air that they used to build the mould that will keep me still during radiation treatment.  Once they found a position that worked for them, they'd release the air & the mould would harden around my legs.  If they needed to make an adjustment, they just filled it up with air again! So cool!  Also, the giant digital photo frame on the ceiling showing blue sky & tree  branches was a really nice touch. :)  I want one! ;)  In addition to this, they drew lines on my leg & placed tape in certain places, which will ensure they place my legs in exactly the same position during each radiation session.  Still waiting for official confirmation of the chemo & radiation start dates.  Tentatively, they commence next week, but I'll believe that when I see it, since one staff member today suggested it could be another two weeks before they start!  Arrrggghhh!!!  So frustrating!  I feel like my leg is a ticking time bomb!  I just want them to get this treatment started before Sir Alien decides to freakin' migrate somewhere else!

In addition to the radiation planning, the pics below show a lot of the past month, including pics of several of the tests.  Speaking of which, one more test tomorrow - ultrasound on my ovary.  Crossing every appendage possible it turns out to be nothing to worry about!

Last but not least, I have to give a huge THANK YOU to the CCS's Volunteer Driver program!!!  My driver was wonderful!  She even waited while I was at my appointment, so that we could get going as soon as I was done!

Sorry if this post is rather all over the place.  I'm exhausted!

*[NOTE: The title of this post was inspired by the song "Pictures" written by Brian Molko.