When Your Rose Coloured Glasses Get Smashed.....

We opened up our Pink Ribbon Project planning this year by taking some time to look back at the past 5 years. We asked ourselves, is this where we thought we would be? Is this what we hoped PRP would become? What are the biggest things we've learned?  And for me, where am I at personally, as the daughter of someone living with metastatic breast cancer?  It's hard to look back because so much has changed; so much has happened.

When I think back on the early days, following my Mom's diagnosis and ask myself.... Is this where I thought we would be? Honestly, I had no idea. I could never have predicted what these 5 years would bring. I feel like I was too scared at that point to make any real plans or predictions. It felt like our world had just been blown up and my heart was broken. I’ve always been a really positive, glass half full, things will get better kind of person; but I feel like this experience has changed me. This experience has changed the way I view the world. Sometimes things don’t get better, sometimes the glass is just empty.  Cautiously optimistic is my new mantra. It’s not necessarily a bad thing, but it’s been a tough lesson. There’s been lots of tough lessons.

Looking back on this time as a family, I am faced with many memories I wish I didn’t have….watching my young, vibrant, beautiful mom, "free from cancer" for 11 years, walk with a cane as her breast cancer returned, metastasized to her bones. Seeing my usually strong, big sister crumble with the devastating blow that Mom’s cancer had spread to her liver just two short years into the return of the disease, when the only thing keeping her going was the hope of keeping it "just" in Mom's bones for as long as possible. Holding our breath and bracing ourselves for the worst while my oldest sister had a big breast cancer scare of her own.  Watching my strong & silent Dad remain largely strong & silent while he, for a second time got the news that the love of his life would face this disease and this time he would be faced with the reality of losing her. Not to mention the son-in laws, having called her Mom for 10, 15, 20 years come to the realization that she may not always be the permanent fixture in their corner that they have come to count on over the years. Trying to find the right words earlier this year, when we were finally forced to explain to all of our littles that ‘Damma Jode’ has cancer, that she will lose her hair and that she may not be here forever, like she should be.

Photos : Rachel Boekel Photography

But at the same time, I also have 5 years of amazing memories that I thought I may never have. 5 years of memories that I truly thought would be stolen from me. When my mom was first diagnosed I was 29 and yet to become a Momma myself. We have been so blessed that my mom has been able to see not one but two of my babies come into this world. She’s fulfilled her dream of seeing 5 of her grandchildren come through the doors of her preschool at BELA and been able to send them off to big kid school, with #6 headed her way this fall. She crossed a bucket list trip off with a once in a lifetime Alaskan cruise with my dad. Plus 5 years of birthdays, Christmases, anniversaries and family vacations that can never be taken away. Not to mention all the little things: recitals and hockey games, sleepovers at Gramma’s and countless family dinners and trips to the park. It's often those little things that feel the most important.

Such is the reality of a family with a loved one living with metastatic cancer (MBC); another difficult lesson learned. There’s two parts to every day, two versions to every memory, two sides to every decision.  Well meaning people, cliches and counsellors tell us to ‘live for the moment and take it one day at a time...because none of us know when it will be our last day...any one of us could be gone tomorrow!’ While that may be true, everyone isn’t living with that constant fear, waiting for the other shoe to drop, every single day. It is the fear that is the hardest to overcome! And it never gets any better. Of course there’s times where we can just be present in the moment and soak it all in; but it’s always there, always looming. As a family we are faced with that reality every second of every day. Cancer is everywhere, every day of our lives. Every choice in our lives is made with the consideration of cancer. While we are so blessed to have the time, happy moments are often tainted with the thought that there will never be enough time. We get this Christmas, but will we get the next? She may see my son Burke go to Kindergarten, but will she see him through middle school? We live with the weight of two sides to every situation....there's even two sides to that!! It's a weight but we are very grateful that we get the chance to consider the two sides. Many people have a loved one taken away from them in a second, or in weeks instead of years and never see it coming. They don't get to consider the two sides.  While that part never gets any easier, I have learned that although I’ve been forced to make so many decisions with an ever ticking clock in the back of my mind, I don’t regret a single one.

Looking back, I maybe didn’t need to have those babies quiiiiite so close together for fear my mom wouldn’t get to meet them both, but at the same time that’s just more time she gets to spend with them and them with her. Or maybe we didn’t need to plan a hasty trip to Las Vegas in the plus 40s of July in case we didn’t make it to the next spring, but those long summer days soaking up the sun with Gramma and Papa will be cherished forever! And that goes for each and every decision I have made where I chose to spend the time, not just with my mom but with all the people I love. I’ve learned to take nothing for granted, and when I see the opportunity, to take it. To try my best not to get wrapped up in the busy-ness that is life, and make the time for the things and people that mean the most. Grab every single second you can and savour it...then tuck it away for a rainy day that I know will come far before any of us are ready. Go for coffee, fit in a chaotic play date with all the kids, book that shopping trip together, get away for a girls weekend, take that vacation. I know without a doubt that I will never look back and say, gee I wish I wouldn’t have...

As for PRP...looking back to those early planning stages of our first event I feel like I was cautiously optimistic as well. I was so hopeful that this would grow into something big but I had no idea the journey we were in for! I had no idea that we really knew almost nothing about MBC and neither would most people we would crossed paths with over the next few years including many health professionals. So we spent the first couple years learning all about what it is, and what it isn’t; and educating those around us. It’s a disease without a cure that can’t be counted down by a finite number of rounds of treatment, with an end in sight. The treatment protocol can, and most likely, will change numerous times, but people living with MBC will be in treatment for the rest of their lives. We were also very surprised and extremely disappointed to learn that the healthcare and drug approval systems in Alberta and across the country would let us down. I naively thought that living in Canada, one of the greatest countries in the world, cancer patients would have access to the drugs that they need. Unfortunately, it’s just not that simple. Talk about standing at the bottom of a very steep learning curve, looking up at complicated political processes intertwined with an ongoing battle between pharmaceutical companies and our government, all of which we knew very little about. Definitely not where I would have predicted we would end up. More tough lessons.

However, I also would have never guessed that just a few years in we would be making a goal to push past $100,000 raised for organizations like the Canadian Cancer Society and the Canadian Breast Cancer Network that are working on the frontlines directly impacting research, treatment, and supports for those facing a breast cancer diagnosis. Or that our foundation would partner up with some  big game changers in the MBC community to advocate for those living with stage IV breast cancer and push for the approval of the very drug that my mom needs as her disease progresses! I would have never predicted that the four of us would walk up the steps of the legislature to help deliver the message to the Health Minister that what they are doing is simply not good enough. Not good enough for our Mom and not good enough for every other Albertan living with metastatic cancer! 5 years ago I would not have anticipated that our foundation would be supporting this important work day in and day out, by aligning ourselves with organizations, advocates and patients across the country who are pushing for better, faster more equitable access to treatments for MBC.

I think one of the biggest and best things that I didn’t see coming was the overwhelming amount of support we have received from our family, our friends and our community! In fact, just this past fall we were a part of one of the biggest MBC teams in Canada at the Run for The Cure , and I was so grateful and proud of the crew from Brooks that made up a big part of the Calgary team! None of those big wins would have been possible for us or our foundation without the support of the community we have built in the last 5 years. We have countless people reaching out to see how they can help, how they can become involved, and how they can stand up alongside us to advocate for those living with breast cancer. Our family has become so intertwined with PRP that it’s almost impossible to separate the two. It has given us a positive outlet for everything negative that comes along with an MBC diagnosis and shown us that there truly is still so much good in this world. The Pink Ribbon Project and the work of Full Circle has really evolved over the past few years, the more we learn about MBC and what it really means to advocate for those living with the disease, our focus and energy shifts and changes. We are so humbled by the unwavering support of our incredible event committee and Full Circle crew that has evolved into our PRP family. And the generous sponsors and guests that keep coming back year after year have shown us the true strength in numbers. We have been able to share not only the victories with all of you, but we also have this tremendous support system which truly helps to shoulder the disappointing losses as well.

The last 5 years has been full of big wins, big losses and even bigger lessons. I've learned that the patient is the centre of it all with an unpredictable and very powerful disease reeking havoc inside them, but that the patient's career, family, friends, hopes, dreams, are the collateral damage.  I’ve learned that even when you're dealt an incredibly shitty hand, or faced with adversity to put it nicely, there’s still something you can do! Find it. I've accepted that even if all of this isn’t enough to save my mom, we will know that we gave it absolutely everything we had, and so will she. And maybe someday it will save or greatly extend the life of another Mom, Gramma, sister, or friend faced with an MBC diagnosis. Only 22% of patients with metastatic breast cancer live past the 5 year mark and up to 30% of early stage breast cancer patients will have it recur as metastatic 5, 10 even 20 years later! This is a community of people that need our help.

It's 5 years of PRP and 5 years for my Mom and I can hear the ticking of the clock louder than ever. But we can't stop the ticking, we have to learn to live with it and keep pushing to get her what she needs because what we need,  is to keep her here where she belongs as long as we can.  These past 5 years I’ve learned that we are all so much stronger than we think we are.  Even if we get knocked down and our rose coloured glasses get smashed,  we can still drag ourselves up and find the will to fight. You have to. I’ve learned that you truly won’t know what your community is made of, until you have the courage to stand up and ask for their support.

Photo: Em Rose Photography

We can't wait to share Pink Ribbon Project 5 with you, as we look back at everything that’s been accomplished,  the important role each and everyone one of you has played and with a healthy dose of cautious optimism,  look ahead to what the next 5 will bring!

~Ashley Williams

*PRP 5 Tickets are now available. Email fcf4wellness@gmail.com to get yours. *