Monday 26 May 2014

Long time, no blog!

Well it's been awhile, but my decision to participate in the Spring Sprint in a couple of weeks made me think I should update this page and link it - just in case people supporting my walk wanted to know a little bit more about my story and why I am doing it.

It's been a busy year or so since I have last posted and many things have changed!! I can't really complain :) Life is wonderful…I became an auntie to the cutest little girl in the world, Alexa Evie, I've been able to go on some fun trips with great people, I FINALLY bought a house (c'mon build faster!!) and work is as fun as always.

The cushing's disease unfortunately continues to linger over me…some days the rain cloud is a little bigger than others, but I try my hardest not to be an Eeyore about it. Three brain surgeries clearly wasn't enough, so much for third time's the charm, BUT things have gotten immensely better. I look back at pictures from when I was at the height of everything and it makes me so sad for the me I was then, but at the same time grateful for the me I am now. I may not be back to what I was (I try not to look back at THOSE pics, then I get really sad haha) but I'm a whole lot healthier than I was, can do a lot more physically and mentally, so I can only hope things will continue to improve.

There was a period of time when they thought I was cured, happiest moment of my life, but it wasn't meant to last. The doctors are unsure of what happened…but think they must have left just a few tiny cells behind. That's the thing when you are dealing with something so incredibly small. They couldn't even pick the tumour up with an MRI at first, so obviously it would be a challenge to operate on - and I had the best team in Calgary. I don't fault the medical team at all, it's just one of those things.

People often ask what my next steps are, and I honestly cannot say. For now my doctor and I have decided to manage the cushing's with a medication called cabergolene. It's pricey, but doesn't seem to have any side effects. It is not ideal, but it's the best option for me right now. Hopefully it continues to work for awhile at least. We keep having to up the dose, so yay for benefits! Eventually I may have to start another medication which is a bit more hazardous for my liver, but we will cross that bridge when we come to it. Another brain surgery has been discussed but the success rate is only about 10% at this point. Still, it may be worth pursuing one day. Honestly, I don't want to put my life on hold anymore so I'd rather not right now. The idea of radiation therapy has also been tossed around but I'm avoiding that for as long as I possibly can…the way it was described to me, I'd prefer to have the cushing's, yikes! The doctors disagree however, as they insist cushing's is life threatening if not treated. Blah.

For now, I'm just taking it one day at a time and trying to keep a positive outlook. Life is far from perfect, and I may not be as physically fit as I'd dream to be, but it's silly to focus on that. I try to focus on the positive things in my life and appreciate every day for what it is. I have my down days but everybody does. It was actually one of my low moments that inspired me to google charities that support Cushing's Disease. There isn't one specifically for it but my search led me to the Brain Tumour Foundation of Canada and lo and behold, pesky little pituitary adenoma was on their list! I saw the link to Spring Sprint and thought, what the heck! I like to walk, I hate tumours, so this is perfect. One little thing I can do to hopefully make a difference in the future of all brain tumour patients and their families and friends.

I'd like to say a BIG GIANT SUPER DUPER HUGE THANK YOU to all of my own family and friends who have stuck with me throughout this ordeal. I know it hasn't been easy for you either and your support has made me feel so unconditionally loved. All of the kind messages, cards, phone calls and visits have touched my heart beyond words. Listening to me whine, being a shoulder to cry on, taking me to appointments, flying across the country to see me, and just laughing with me has meant so much. Didn't know you were signing up for so much when you got to know me did ya? Haha! Love you all so so very much I am incredibly lucky to have you in my life xoxo