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

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

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

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

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

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

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

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

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

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

And So Begins My "Battle for the Sun"... Getting My Cancer Diagnosis.

04/07/15 - So, it's been a week since my CT-guided biopsy.  Went in to the hospital today for my results.  The wait felt like forever, as I arrived an hour early & the doctor was running an hour late.  Fortunately, I brought entertainment in the form of Placebo's "We Come in Pieces" concert video on my iPad, that was a much needed & helpful distraction.  But alas, the time finally came & into the doctor's office I went...

First, they had a medical resident intern ask me a bazillion questions about my medical history & symptoms.  Then she had me get into a gown & went away for ages, only to come back, ask more questions & leave again.  This wasn't looking good.  Finally she came back with the doctor, and after two long months, my wait for a diagnosis was over.  It wasn't good.  Yep, the C word...cancer...or more technically a myxoid liposarcoma, which is a type of soft tissue sarcoma.

Needless to say, my head's been spinning ever since.  Had a little mini breakdown before leaving the hospital, but relatively speaking, I'm okay.  Going to start the short term disability claim process tomorrow.  I was actually crazy enough to consider going int to work...to, well, work, tomorrow but no...  I'd like to keep my job, and the last thing I need is to lose my temper with a customer due to stress & then lose my job & much needed benefits because of it.  So, I advised my manager that I may come in to pick up a few things, get the mailroom to fax my insurance claim & talk to a few people, but that's it.

Now, of course, I have a million questions, such as what stage am I in & what are my chances of survival?  This will all be determined with...you guessed it....more tests. First up is a bone scan to see if it's spread to my bones.  This is already scheduled for two days from now.  Second is yet another CT-scan to see if it's spread to my abdomen or lungs...still waiting for  date on that one, but they're trying to push it for this week.  Then, hopefully in six days if we manage to cram all the tests into this week, I'll meet with the same doctor from today who's an orthopaedic surgeon (the one who'll be removing my tumour) & another doctor whom I assume is an ecologist, for further consultation.  Then, I'll undergo three days & nights of in-patient "chemo-light", for lack of a better phrase, to "sensitize" my body for 10 days of out-patient radiation therapy.  *Gulp*.  Not looking forward to either of those last two, but they said it's better to do those first, to have as few complications as possible.  Then, I have a month break to recover, and then regardless of whether or not it's spread, surgery two months from now to remove the tumour & hopefully save my leg.

In the meantime, I've jumped into action mode, doing what I can while I can.  So, tomorrow, before popping into work, I'll be calling all of my insurance companies to start THAT part of the medical roller coaster that is my life right now.  C'mon insurance, don't fail me now!  Crossing every appendage possible that process won't be as horrendous as I'm anticipating it to be...  Here's hoping they do large-print or e-forms.

And last but certainly not least, I began the task of telling my nearest & dearest the news.  As soon as the doctor told me, I immediately felt guilty, wondering if I'd done something to cause this by not eating enough fruits & vegetables.  I don't know if they were humouring me, but they seemed sincere when they said "No", and that "this type of cancer can happen to anyone" & that "it's just dumb luck who gets it". Telling my mom, aunt & best friend of nearly 30 years was the hardest.  Everyone else I just did a mass message on Facebook.  Sorry about that, but it was hard enough having this conversation three times, let alone another 70.  Hope you all understand.

I also worry about how this will effect my mom, who's already said she'll move in with me during treatment if necessary, but that's going to be so tough on her with her work being on the opposite side of town. :(  And my poor best friend...   She's still getting over losing her mom to cancer.  That just makes me feel even worse. :(  Not like there's ever a good time for this kind of thing to happen, but seriously Universe, this is not funny, not funny at all. :/

Well, that's it from me for now...  I'll write more when there's either more news or after I've had the aforementioned tests...  Cross your fingers for me the next bit of news will be good!  I need all the positive energy I can get right now!

*[NOTE: The title of this post was inspired by, yes - you guessed it, Placebo & their album & song of the same name, "Battle for the Sun", one of my favourite albums of all time.]