Paving the Way

Hello everyone!

Wow! Another crazy week! Things have really built up a bit of steam around here. As you probably know my sister Ashley started a GoFundMe account to help cover the cost of my treatment. I have to say that I am in absolute awe of the rapid response of the community! Things have been moving so fast I am afraid I am missing half of what is happening! But it has been completely awe inspiring. So of course I have to start this blog with a GIANT THANK YOU! Thank you to everyone for your support and your generosity!!!!

Today’s post is about the power of community. There are many communities in our lives and they all vary in significance and relevance during different parts of our life but they create the framework of our support systems. Their relevance in our lives may ebb and tide but they leave lasting footholds in who we are. Something that has given me a lot of “context” or support during this journey is that I am not the first and nor will I be the last woman (or man) to be going through breast cancer, and that I am a new member of this unique warrior community. I do believe that there is not a single person who has not been impacted by breast cancer(or any cancer) in some way. However it is important to remember that all battles are individual and unique. During a conversation with my grandfather I have drawn some interesting parallels to his experiences during the war as to those of mine. The main one being is that at similar ages we were both battling to survive but in very different battles and environments.  I would like to clarify that I fully comprehend that there is a huge difference between fighting cancer and the horrors of war, and that I draw these parallels as life lessons and not direct correlations. 

He enlisted at 17 and spent 5 years overseas. I have the utmost respect for my grandpa!

Something that came up as a theme in one of our discussions is that although there were millions of people affected by the war, each person’s experience was wholly unique to them. This works on such a vast array of levels that I find myself reflecting on this a lot. You can even take two men from the same unit and they can tell you the same story with the same facts however each person’s experience is impacted by their previous experiences, their current state of mind and even their vantage points, aims and goals in the situation can be so extremely different. Then of course there is how you experience a moment in the now and how it can evolve as you relive or remember and how we grow from these experiences. Even with their independent experiences these men formed a strong comradeship between them and supported and protected each other.  In war there are many individuals with many stories, it is their individual strengths that combine together to create the army. It is the same as in the community. It is the combination of individuals all invested in the good of the whole that makes it so strong. We learn from the experiences of those before us and strive to improve the path for those coming behind us. This again parallels to the realities of the world wars. Due to the numbers of casualties first aid practices changed rapidly from the beginning to the end of the war. Each man whether a survivor or a casualty was able to improve the survival rate of those who came behind them. As the lessons learned from those before saved those that followed. This too is the way of the cancer journey. The road has been paved by the experiences of those around us.

WWII first aid kid

In my case I have been repeatedly told that there are no accurate statistics as there are simply not enough women may age to have the numbers to create them. So in short my road is more of a feable goat path. But never fear I happen to have been an avid hiker in my youth and I have ran up and down many a goat (cattle) path with no serious harm (I’ve rolled on a cactus or two, and was once terrorized by an angry lone heffer). I don’t mind taking a road not so traveled. The good news is, I get to help create the statistics. When I was in elementary school I had a teacher who would release us to the world on Friday afternoons with the ominous words “Don’t Become a Statistic”. I love this saying, because no matter how hard you try, you fall into the statistic... if you’re not in the 25% that do, you must be in the 75% that don’t. So I always took it to mean, “fall on the right side of the statistics”. I know I am not alone, and I know that there are those before me and those around me. And I owe it to those behind me and those in front of me to fight like hell to create positive statistics.

one of my favourite child hood hiking trails the "Sandcastles"

I am very lucky to be embraced

within so many strong and supportive communities. And with the help of everyone am able to take this drug regardless of the “coverage” issues. I am equally grateful for the fact that this drug is even available for me to take. However throughout this journey I have expressed concern about those that are not blessed with the supports that I have. What about the single parents who have to focus their energy on raising their families amid the treatments, or new Canadians that are just learning the basics of the language let alone the intricacies of all of the forms and bureaucracy that are involved in this battle. I am so lucky to be able to go ahead with this treatment, but that doesn’t mean I should sit back and ignore those that are not as lucky as I am. Moving ahead with this is about creating an opportunity for everyone to have access to this drug.

I understand that there is a system in place and drugs need to be researched. I whole heartedly agree with this process as it is important to ensure patient safety and ensure best practice. However, currently research exists; both of the Oncologists I have seen agree that the evidence supports a significant benefit to me taking this drug. If it was simply a matter of the drug being so new that they were still in the process of approving I would not be as concerned. However the message that we have essentially been told is, we are not looking into it because the company hasn’t requested us to yet. In other words, we are sitting here and can do nothing until this drug use has been applied for. I agree that this process should be in place, but I disagree that everyone’s hands are tied. More can be done, more should be done.  This process is long enough as it is when it is running smoothly. However this drug has hit a standstill and as it stands my understanding is that it could be years before the use of this drug is approved for stage 2 cancers in Canada.  And years is lives. I feel that we owe it to those who have fought the battle before us to pave the way for those to come, the best that we can.

I have to admit. It was a really tough decision to “go public” with this. Writing a blog for family and friends is one thing, going on the news is wholly another. Going on the news bald, well that’s plain terrifying! (It’s a good thing I got a hair cut yesterday and buzzed off all my “ghost hairs”). As many of you know, we decided to go ahead with this treatment regardless of funding due to the immense support of our family and friends. Going public has been about impacting the lives of those coming up behind us and that is where I gain my strength and energy to move ahead with this. Although it is a worthy cause, it has been both exhausting and daunting. But I have a saying and that is “I run on will power”. If something is important, you find the energy. And although I may not have my normal amount of energy I will have enough to see this journey through. Am I terrified? Yes! I have only done phone interviews so far and I am an absolute nervous wreck during them. Those of you that know me, know I am a nervous talker, so that makes me even more nervous.  However, I have another term that I use with confidence issues and that is “Fake it till you make it”. In different situations in my life I have been asked “why aren’t you scared” or told “you look so confident”, when in all reality I am scared out of my mind, so I guess what I’m trying to say is... eek I’m so nervous! Please don’t judge me!  (See that nervous talking bit there). Back on track here, I know that this journey is going to take a lot energy when energy is a bit of a rare commodity, but in the end I believe it is worth the fight!  Because in the end we hope to make a difference! Because ultimately that is what communities do for each other! We fight for those that cannot fight! We stick together and leave the world a better place behind us!

So we sign off today with gracious resolve to take the gift of opportunity you have given us and share it to pave a better path for those that are to follow!!!

LEFT FOOT! RIGHT FOOT!

Alyssa & Steve