Thursday, August 21, 2014

We're here for a good time!

I hope everyone is enjoying their summer!  It's hard to imagine that we need to start getting ready for back to school already.  I'm actually ahead of the game this year and have the boys ready to go.  Not like last year when I waited until the last minute and found myself in Walmart ready to fight for the last glue stick on the shelf!  We started off the summer with a trip to Toronto and Niagara Falls.  We did a lot of sightseeing with the favorite in Toronto being the Hockey Hall of Fame.  Niagara Falls was beautiful and there was so much to do.  We met up with Jeff's Auntie Bonnie and had fun sightseeing with her.  The Hornblower cruise (the old Maid of the Mist) was awesome and seeing the fireworks from the Skywheel was amazing.

Actually, before we headed to Toronto as a family I had the opportunity to go there for the YACC (Young Adult Cancer Canada) conference.  This was my 3rd conference with YACC and it was fantastic!  To reconnect with these guys again was exactly what I needed.  I met some really great people and heard some very touching stories.  The speakers this year were so inspirational and I came home with a new found strength and hope.  So important when you are living with cancer for a long time - thankfully.  I was able to be a part of a panel talking about living your Legacy.  It really got me thinking about it and what legacy means to me.  It definitely is about making memories and living in the moment for me along with making life fun.   After all, we're here for a good time not a long time like Trooper sings!

I have been feeling really good on this new treatment.  I have been on it now for about 6 months and am not really having much for side effects.  It is like night and day compared to the last one I was on.  My energy has bounced back and I'm happy about not having to take other medications to combat the side effects.  I had my scans done in June and the results really could have been better.  We were hoping that this drug would work better on the brain tumours but the scan showed 1 new tumour and growth in the 2 that were there on the previous scan.  I was told last time that the tumours that had been treated with gamma before were undetectable but that obviously wasn't the case as they were on this scan as well.  I know it's not a perfect science, but it can be so frustrating to think that your tumours have shrunk and disappeared and really they just didn't catch them on the scan.  The good news was that the other tumours in my body have remained stable so the Dabrafinib is working there.  I also had a lesion removed from my chin which looked suspicious for melanoma but came back benign.  The pathology showed that it was a group of blood vessels, not melanoma.  The plan now is to continue on the Dabrafinib and to have Gamma Knife again if things continue to progress in the brain or start causing me issues.  There is another treatment available for me when this one has run its course.  It comes with some fairly nasty side effects so I'm not looking forward to it but at the same time am grateful that there is something else for me to try.  I have been on this type of chemotherapy (BRAF inhibitors) for 18 months which beats out the average of 6 months by far so I remind myself daily of this.  It will be 5 years this December since I was diagnosed with metastatic disease so let me tell you, there is going to be some kind of party happening in Stonewall around that date!  And I can guarantee you there will be cake!!  (and wine)

We headed out to Kenora for August long weekend with the Lindsay's and it was a blast!  This year I really got to enjoy it as I am feeling so much better than last year.  I couldn't step outside last year without getting sunburnt because of the medication I was on so I really enjoyed this year being able to swim with everyone and just hang out.  Sitting around the campfire, watching the fireworks, sitting on the deck chatting and laughing, hiking up Blueberry Hill.....  all so much fun!  I love watching the kids as they do some of the things we did there as kids.  Hanging out with all the cousins, pushing each other off the dock, finding treasures on Blueberry Hill, jumping on the trampoline (only this time it's allowed).  I love this weekend getting to spend time with these guys!!!  Thanks so much for another great one!!

So now it's time to enjoy these last couple of weeks of summer!  This year my youngest moves on to the middle school which is so hard to believe, Grade 5.  My middle one is into Grade 8 and my oldest Grade 11 and driving.  So much has happened in the last 5 years and I will be forever grateful that I have been here to see it and be able to enjoy it.  Life is truly precious!

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