Saturday, September 8, 2012

MRI appointment and reflections

Living in Canada gives us access to a good healthcare system that doesn't require out-of-pocket payment for treatments.  One down side is the crazy hours they expect you to accept for MRI scans.  I just received an appointment time for my next MRI scan.  1:15AM at Toronto Western.  Factor in the 45min drive each way and 1hr long scan.  Are they crazy?  1:15AM on a Thursday morning?  With the scan being digital, and with Durham region having modern MRI equipment, why am I not able to have this scan done at a local hospital or at a reasonable hour?  Why isn't my interventional radiologist able to have my MRI done then a follow-up appointment within the same day, saving me two trips downtown Toronto?  IF this was a life-threatening condition, maybe I'd not be so grumpy about travelling into Toronto for each appointment.  But it's not.  These treatments are my choice, my decision to improve how I live, look and function.  After 6 treatments, I'm ready to quit.  There aren't any improvements. The swelling is still the same, if not WORSE than it was before. I now have jaw movement issues, minor, but just the same, still there.  When my cheek swells, my jaw movement is tight.  When the swelling decreases, it improves.  This is why I am having an MRI, to see what's going on.   Maybe my next step should be a visual improvement.  See if they can reduce just the discolouration, not the swelling.  Wait... there's makeup for that, right?

Perhaps this is bothering me more because we'll be starting all our Fall programs this week.  New kids, more stares, more questions.  I don't mind the questions.  I encourage them! I really hate the stares.  The heads that pivot when I walk past.   I worry that my kids see this.  That they notice others staring at their Mom.  I do my best to make light of any odd questions (hey, what's with your face? ....Oh, I was going to ask about that strange tattoo - a carny at the fair. Like I could ever take that seriously!! ;)  I also try my best to teach my kids not to stare at people with visible differences. 

I've dealt with this for my entire life.  I really can't complain. As far as differences go, mine is pretty minor. It doesn't affect my speech, breathing, or eating.  It doesn't affect my movement. It doesn't affect my day-to-day activities much.  And most of all, it doesn't cause pain.  There are many people with conditions and ailments much worse. My life is good.  I have three beautiful children who make me feel like everyone else.  I'm married to a wonderful guy, who loves me despite my facial malformation.  With all this,  I am blessed.

Or perhaps, I should stop drinking wine while blogging.

Friday, August 3, 2012

One week later.

Can I whine?  A week later and I still have to squish timbits to eat them as I can't open my jaw wide enough. I'll be calling the clinic on Tues if this continues.

Still needing the occasional advil for pain, too.

Wednesday, August 1, 2012


It's Wednesday.  5 days later.
I'm looking at my breakfast thinking.. how am I going to eat this?  Every morning the aching pain in my cheek is more than the previous night.  It diminishes by evening, but after a night's sleep, it's worse than ever.  I wonder: Is my pain tolerance low? Are my expectations too high? 
So I'm writing this post.  That way, next time, I'll remember that 5 days later it ached.  A radiating, tooth ache type ache.  But it's not my teeth. It's up in my cheekbone, closer to my ear. 
Today I will call the clinic and see if this is normal.

Friday, July 27, 2012

Treatment #6 Photo

The little dots are needle marks. I'm thankful for General Anethesia when I see this.
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Trip #6!

I am not a blogger, a writer or a journal person.

Today was Bleomycin trip #6.  As I didn't update #5, here's the highlights from  both:

I see minor improvements with each procedure.  The interventional radiologist (whatshisname??) and I have decided to work from the top down, so focusing on the cheek area first.
They now use gel under the monitor pads to avoid the skin discolouration that can occur with bleomycin and adhesive.  This is good, as I still have faint red circles from Nov. 2011's treatment.

Trip #6, I had a different Interventional Radiologist.  I was out longer and seem to have more needle marks.  

The only lasting side-effect is the skin pigmentation that I have on my left shoulder and upper back.  It looks like tanned scar lines.  Not terribly noticeable, but it's there. It should eventually fade.

I'll post photos later. :)

Friday, November 18, 2011

Trip #4 to Toronto Western Hospital for Percutenous Bleomycin injections.

Pre-Surgery: Wednesday Nov. 16th 2011

Post-Surgery Friday Nov. 18th 2011

I'm expecting the swelling and bruising to appear mid-day tomorrow.
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Sunday, August 28, 2011

Updated photos

I don't think I've ever taken so many photos of myself.  I find that they turn out best when I use the mirror and live-view with my DSLR.   That being said...

Today's update. 9 days post treatment #2

 The big bruised spot has receded, leaving some new dark red/purple splotches.  All around, it feels like it's gone down a bit.  The 2 of the dark dots (of 5 total) feel harder, not as smooth as before.  Perhaps in another week or two the area will change again. I'll post more photos next week.

I'll be booking procedure #3 this week. Should be mid-September.