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. *

What More Looks Like.....

Over the past year, and particularly as we began work on PRP 4, we asked ourselves a couple of big questions. How can we do more for the breast cancer community? What would “more” look like to those facing a breast cancer diagnosis or those who are living with metastatic breast cancer. We knew we needed answers to help us move forward, but those answers did not lie with any of us. The answers lie with those who have lived through breast cancer and those who are living with it today. And so we asked, listened, and learned ways that we could begin to do more.

One of the most clarifying answers to our wonderings came to us by way of a blog post written by Beth Caldwell, an American woman living with and advocating for metastatic breast cancer who explains that “it’s not about being part of the community that needs help, but about standing with them and using our privilege to help them.” Our privilege of being healthy or of surviving cancer. And that “an ally is someone who not just cares about a community in need, but also does something to support them. And what that something is, is what the community says it needs, not what allies think that community needs.” As we moved through planning PRP, these words shaped our thoughts and even some of our words that night. Guidance like that, coupled with talking to patients, researching, and participating in other advocacy efforts have helped us move towards becoming a strong ally for those facing breast cancer.

Photo credit : Em Rose Photography

For more PRP Photos please see Emily's Blog or the full gallery 

One of the biggest ways we can use our privilege of health is by hosting Pink Ribbon Project. It takes a team to do it and we all give of our time, energy, and experience to make it happen. Our team is mindful and deliberate in the messages that we share regarding breast cancer. Our focus remains on honouring all breast cancer experiences, as they are all unique and important; while still sharing the entire breast cancer story. That story includes metastatic breast cancer. Only when we share the whole story, all the possibilities and realities, are we truly honouring all and educating in a way that may serve others. Only when we include all experiences, can we find ways to support people, regardless of the type, stage, and prognosis of the disease.

For us, this concept of “more” is not an end, a measurable to be reached, a check box to be ticked. It’s just the beginning. We see now that “more” will evolve with our experiences with loved ones living with breast cancer and our interactions with the community. It will change in response to levels of funding for metastatic research, access to treatments, and the ever changing landscape in cancer research.

While we don’t know exactly what “more” will look like in terms of our work, we are extremely fortunate to know exactly what “more” looks like when we ask it of our community.

“More” looks like partners and sponsors who have supported us again and again, even through the uncertain times in our economy. It looks like friends who travel to be here and friends who stay late, like really late to visit with us once the work is wrapped up! It looks like the familiar faces who grace PRP every year and bring with them friends who have never been. It looks like vendors who bring our vision to life, giving of their time and talents knowing the budget is tight. “More” looks like hugs, handshakes, circles of friends, and a balance of tears and smiles.

“More” is when things changed suddenly before PRP and we had to say……. we have an important story we want to share with you, but we can’t tell it in the way we intended to. You listened anyway. “More” sounds like being able to hear a pin drop in that room as we told you. It sounds like a story that highlighted the reality and uncertainty of living with metastatic breast cancer………. “More” sounds like you telling us that you were glad we told you the story anyway,  that you understood and you cared. It sounds like us telling the whole story about breast cancer, even though it isn’t easy to hear.

Maybe most importantly of all, we know what “more” feels like. For those of us in the thick of it: patients, former patients, loved ones, caregivers; we get to know what “more” feels like because you keep bringing it to us every year! To me, it feels like joy, sadness, and hope intertwined. It feels like strength and support. Even though I know that we are never alone in this, for that one night I get to see "more" come together all at once and even more importantly than that, I  know that my Mom gets to experience it too! 

 

PRP 4 was truly an incredible evening and we are proud to share that this year we were able to raise $22,000 to be shared between the Alberta Cancer Foundation and the Canadian Breast Cancer Network! The work of both these organizations is vital to those facing breast cancer. We are proud to support their efforts in our province and across the country.

As we close the door on our fourth installment of PRP, we are proud of the work we accomplished, but we won't rest for long. There is much more to be done. We are already dreaming up ways to bring a most special and unique 5th anniversary of PRP to life. In the meantime, we will continue our advocacy work, while continuing to explore how we can best support the breast cancer community, knowing that our “more” may change again and again over time.

To our sponsors and guests; you continue to bring “more” to PRP year after year, and we are proud to be part of a community that stands beside those who need an ally! Thank you from the bottom of our hearts. 

~ Carmen Powell
On behalf of the Full Circle Foundation & PRP committee

Why We PRP....A Mother's Day Blog

Even before I started reading my way through the wall of Mother’s Day cards, I knew I wasn’t going to find one this year.  I didn’t want to read them, I didn’t want to feel like I was choking back tears, or feel disappointed that nobody seemed to be able to put into words what I was feeling for my Mom.  I didn’t want to think about the future, I didn’t even want to think about the past.  I just didn’t want to.

So I walked away empty handed. 

My head and my heart were full of things I wanted to express for my Mom, and to her.  Things I want people to understand about Stage IV breast cancer, about the brave souls fighting their battle with it, and about the families and friends battling alongside them.

I remembered I did have a card tucked away that I had been saving for my Mom.  To me, it seems to better capture the person she is: the selfless woman I admire, the courageous fighter I am in awe of, and the fierce giver of support, encouragement and love she shares with the world every day.......

“Once in a blue moon, people will surprise you…

and once in a while,

people may even take your breath away.” – Grey’s Anatomy

Thank you for making mine a lifetime of blue moons.

My Mom has always kind of taken my breath away.  From the early days when you love your Mommy just because she’s the most beautiful Mommy in the world, to the years when your love grows into respect, admiration, and gratitude, my Mom has never stopped amazing me.  She never will.   I will never be able to fully express my love, but I promise I will never stop trying.

Being part of the family of a Stage IV patient is a delicate balance.  There are so many days when people tell me how good Mom looks, and how they almost forget that she’s sick, and I am thankful for every one of these days and comments.  As her family, we are thankful for every good day, and every good checkup.  Whether we acknowledge it fully, our collective anxiety rises as each scan and test is performed leading up to her next three month checkup.  We hold our breath, waiting for either the other shoe to drop, or a good checkup.  Good meaning that the cancer in her bones is staying put, and not taking up residence in more sites, or in her organs.  Living with Stage IV in the family feels like a constant battle against the disease, and the clock.  Daily, we balance hope and fear, optimism and realism, and often struggle with so many questions that don’t have answers. 

Mom takes her hormone therapy and bone strengthening injections like most people take their vitamins.  She puts up with her family of watchdogs checking up on her – is she eating enough, resting enough, sleeping well, taking time with her friends, and taking time for herself??  She has always approached her fight with an attitude of accepting whatever it takes to keep her here for “her people”.

What I hope she knows is how very blessed we all feel to be “her people.”  She worries endlessly about how her cancer impacts her family, her friends, our friends, and the people around her.  It is hard, absolutely, but in the face of uncertainty and difficulties, our family has grown stronger and closer.  We tell it like it is, hold each other a little tighter, and make the most of the moments we have together.  Our extended circle of love and support is also amazing, and we have nothing but gratitude for that.

We are three years into this journey with Metastatic Breast Cancer.  A disease we knew very little about prior to Mom’s diagnosis.  We really didn’t know that 30% of those diagnosed with breast cancer will have it come back as Stage IV.  We didn’t know any of the things we maybe should have been watching for.  We didn’t know there were so many types of breast cancer, so many treatment plans, or so many people battling.  We just didn’t know.  Until we had to.

I think that is one of the most important things for people to understand about the Pink Ribbon Project.  To us, it is not just a fundraiser. We have so many reasons why we PRP.... It is about taking action in the face of something so much bigger than just our story.  We are raising money, but we are also raising awareness, educating people, and creating a community of support where people feel they can find the resources they need, or someone who just might understand a little of what they are going through.  As we work to educate ourselves, we hope to educate others.  As we find our voice for those fighting this disease, we hope others will join in to make that voice stronger.

The first two years of PRP benefitted the Canadian BreastCancer Foundation, which focuses funds mainly on awareness, research, and early detection.  This year we have expanded our focus to include the Canadian Breast Cancer Network as a second beneficiary.  This survivor driven agency works to make sure patients are getting the best care and support possible.  Recently they have placed more focus on Stage IV, which is why it is so important to share our support with them at this time.  They are fighting to ensure that Stage IV patients have access to the medications and treatments they need to prolong life.

We are proud to lend our support and voices to both of these organizations as they work to provide the research, support, and advocacy needed across all stages of breast cancer.  Both are needed, both are important, and both provide hope and resources to those who need it most.  For us, it has to be both.  We need to continue supporting the work towards an eventual cure, while also supporting those working on life extending treatments for those facing Stage IV right now.

Each year my list of reasons grows as to why I PRP.  My hope is that sharing our stories helps other people to understand more about this disease, and that sharing our event creates a feeling of community and strength.  Some days I feel like my three year-old at bedtime asking, “Mommy, will you stay with me for just a little longer?”  Other days, I can feel stronger, that as we educate, advocate & donate, we are making progress, making a contribution, and possibly a different story.

Happy Mother’s Day Mom!  Thank you for being a fighter always – I love you to the moon and back, and more than all the stars in the sky….xoxo

~Tara

(For event & ticket information for the Pink Ribbon Project please see our webpage or  follow us Facebook )

Why We PRP......

Joining the Pink Ribbon Project (PRP) committee three years ago was a no-brainer ! My mom is a breast cancer survivor!  I knew that I needed to learn more about this disease and do my part to raise awareness and funding for research.  Not only does my mom’s future depend on it, but maybe so does mine and my daughter’s, maybe  her daughter’s and the daughters after that!!! I know that what we do now, will impact our family's future for years to come.

Working on PRP has given me a chance to look back and look forward. Looking back reminds me of how it was in the beginning, for me and for my family. Bringing the Pink Ribbon Project to our community allows me to help others who are just getting started in their own journey with breast cancer.

When my Mom was first diagnosed, the unknown was so very scary. I will never forget sitting in the Doctor's office while we were given the news. My Mom had breast cancer. How do you even begin to ask questions about something you know nothing about? We obviously knew breast cancer existed but all of a sudden we were overwhelmed with information. There are so many different kinds of breast cancer and different stages and it's not just as simple as getting the lump or breast (s) removed (which is actually a whole other difficult decision in it's self!) It was all so  confusing. I wish I had been more aware. Even while my Mom was going through treatment, I still didn't understand all it entailed and what it might mean for the future.

So in the beginning it was simple. My Mom is a survivor and I wanted to help. I wanted to know more, I believe that knowledge is power. Over the past few years, my reasons for continuing to "PRP" have become more complex as my own understanding of breast cancer grows. I am still learning about breast cancer and being on the committee is the biggest part of that.

Listening to the impact that breast cancer is having on my fellow committee members lives and families has opened my eyes. I didn't know that when or if breast cancer 'comes back' that it can come back as stage 4, or metastatic breast cancer and that when it does, it won't just be in the original breast location, it can come back in your bones or organs and it's still called breast cancer!! I recently learned that 1 in 3 breast cancer survivors will have their cancer recur as stage 4! This statistic tells me that there is a possibility that my Mom's cancer could come back. Now don't get me wrong, I am still hopeful that it won't;  but if it does, I will be more educated and feel a bit better knowing that through the Pink Ribbon Project I have helped put forth an effort to raise funds for research and education.  Our support of the Canadian Breast Cancer Foundation allows us to support research, and the work that they do in discovering life saving treatment and hopefully one day, a cure for breast cancer.

This year we are choosing to expand our support for breast cancer organizations to include the Canadian Breast Cancer Network. Now, I don't know about you, but I hadn't heard of this organization or the work that they do! They have been working hard to educate others on stage 4 breast cancer and we want to support them in this area while we learn more about it ourselves!

One of the biggest reasons I continue to volunteer for PRP is to support others. It makes me teary eyed to hear stories of those  in our community that have just received a diagnosis, approach survivors they met or heard about at Pink Ribbon Project! Without attending PRP it may have taken them longer to find someone to reach out to for support. We believe strongly that it's not just about raising money. Its about awareness and creating a community of support. I had a friend contact me when she was diagnosed with breast cancer to see if she could talk to my Mom. It's very important not to feel alone. For those who are going through breast cancer to be able to connect with someone else who truly understands is so important. If we can help make that happen, that may be the most valuable thing that we do!

I am so proud to be part of the PRP team and of all we have accomplished over the past few years and I have big hopes and dreams for the future of the Pink Ribbon Project. You can find all the event details for this year, including ticket information here: PRP 2016 or follow us on Facebook or Twitter to stay up to date!


While there are many different reasons as to "Why we PRP....." my biggest WHY will always be my Mom. She is the best Mom and best Grandma in the world! Her grandkids adore her and even call her "Fun Grandma" because she has always been the type of Grandma to get down on the floor and play with the kids! If there is a kid tent, she's in it; a game to play, she's playing  ; you want to go to the dollar store, just say the word!! We all need her in our lives for a very long time!!

This Christmas will be 5 years since my Mom was diagnosed with breast cancer. I am thankful for the care she received and the advances in the treatment of breast cancer that are keeping her right here where she needs to be! Mom, you are my rock, my advisor, my BEST friend! You have always known how to build me up and give me strength when I need it. Thank you for everything you do and everything you are. You are the most courageous & strong woman I know and I strive to be like you. I love you and cannot imagine life with out you!
~Shanda

In the Beginning.....

The Full Circle Foundation for Wellness came to be when our dedicated group of friends wanted to do more! We had been working together for a few years putting on one event to raise money for breast cancer research; but somehow that wasn't enough anymore. We set out to found an organization that would give us the opportunity to become more involved in our community and allow us to do more  for causes that are important to us.

The Full Circle Foundation for Wellness is an Alberta based Non-Profit working with wellness focused organizations and charities in Canada.  We work to educate ourselves and others, advocate for and donate to causes that we are passionate about, while empowering others to do the same.

Our areas of focus are physical and mental health & wellness, education and child & youth development.

Our work will include the continuation of the event, Pink Ribbon Project, which originated in 2013 and raises funds for breast cancer awareness, patient advocacy and education. you can learn more here: https://www.facebook.com/groups/pinkribbonproject/

This year we will also be hosting the first annual Dallas Williams Memorial Golf Tournament, with proceeds going to suicide prevention & mental health initiatives. You can find find all the event details and registration information on our Facebook Page.

We will be offering new events and volunteering in our areas of focus as new opportunities arise.

Thanks for taking a few minutes to visit this forum where we will share our work, events & ideas!