As I reflect on the concept of time and what it means to me, the first thing that comes to mind is how much of it I have probably wasted throughout my life. And, I'd be willing to bet that most people who have been diagnosed with a chronic or terminal illness probably feel the same way. It isn't until our time on this earth is suddenly limited in some way that we are able to see clearly how valuable our time becomes. 16 months ago, when I was diagnosed with stage IV Metastatic Breast Cancer, I was suddenly transformed into a person who was always putting things off into a person who is now getting up every day with a new mission... to live fully! This didn't happen quickly, however. It was a long journey for me before I was able to make peace with my diagnosis and find the strength and courage to live again.
When I was first diagnosed, my world came crashing down around me. The only thing I could think about or see was death. In my mind, my life was ending. I fell into a dark place of sadness and depression. I became desperate, angry and afraid of facing the unknown future that lied ahead for me. Treatments, side effects, pain... there couldn't possibly be anything positive for me to look forward too in the years that lie ahead. I remember thinking to myself that there was no way I would ever be able to accept this diagnosis. I felt that there was no hope for me to ever find happiness and joy again. I felt like a robot just going through the motions of life, but not really seeing the point in participating. When you feel like your life is over it's hard to know how to take the next step. For me, time had suddenly run out.
Luckily, I am surrounded by so many beautiful people who stepped into my life as soon as they found out about my cancer. They gave me the time I needed to grieve. They listened to my fears, supported me, cried with me and held me up. Eventually I began to slowly reach inside myself and find the strength to finally get up on my own. I began to hold on to those little bits of courage and use them as my fuel to get up and face life one step and one day at a time. I am forever grateful for the people who were there and are still there for me each and every day.
It didn't take long for me to begin to reach out to other women like me who are also getting up every day and trying to live despite a terminal diagnosis. The more I listened to their stories, the more alive I began to feel. It was through their stories and how they embraced me with support that I began to see that there was indeed plenty of life for me to live. If they could do it, so could I.
I also began to see that something was terribly wrong in the world of MBC... our voices and our presence has somehow been made invisible over the years and many are living their days in isolation as a result. It saddened me that so many were in their final years on this earth and had little to no support. After a while I realized that I knew exactly how I wanted to spend whatever time I have left. I wanted to be an advocate for more research and support for those who share my diagnosis. Helping others has always been my salve for anything that ails me. And, helping to advocate is definitely time well spent!
I started slowly by creating this blog so I could share my story. I joined groups... I listened... I took notes... until eventually I found myself thrown into a world of advocacy that has now begun to enrich my life in ways I never thought possible. And I have learned the best way to create change is by sharing my story and allowing others to walk along beside me as I hold hands with cancer.
Just recently I completed training with the Living Beyond Breast Cancer Organization as a Community Connector. I flew to Philadelphia both nervous and excited to meet all of the women I would be working with on this team. What I gained from this training was truly empowering. I found myself surrounded by the strength of women who had all faced a breast cancer diagnosis. Some of us were survivors, some were currently in treatment, and then there were those like me who would be in treatment forever. All of us had our own story to tell that was unique and different. The only thing that wasn't different was our determination to do our part in providing support to those in need. And, all of us want to help pave the way to a cancer free future. When I came back from this training, I felt renewed in spirit, empowered and realized that time is not necessarily my enemy. Not if I choose not to waste it, not if I use my time to leave behind a better future for my children. All of us went home from our training having gained a few new friends, a new purpose and a shared motivation to support and educate others who are stricken by this disease. When you look at this picture you can see that cancer doesn't care how old you are, your ethnicity, or how much you want to live. It takes who it wants, when it wants and it shows no compassion. It takes a village to conquer cancer. And, we are stronger together!
A couple of weeks later I was given an opportunity to participate in a retreat for stage IV breast cancer. This retreat was sponsored by The Casting For Recovery charity and it was the first retreat that was comprised solely of only stage IV patients. A long time ago someone decided to use their knowledge of Fly Fishing as a way to bring those who have been diagnosed with breast cancer back into nature as a way of healing. I didn't know what to expect when I signed up for this opportunity, but what I got out of this weekend was invaluable. I was completely blown away at the generosity and compassion that these wonderful individuals had for me and the other women who attended. This was so much more than an opportunity to learn how to Fly Fish. It was a lesson in living! It was a reminder to us that our time may eventually run out, but not today. Today, we can learn something new. Today we can reach out and find joy and peace by embracing the beauty that only can be provided by nature. I learned that friendships can still be made, love can still be given and it is possible to still have fun. I also learned that people are taking notice of us and our cause. And when they do take notice, they embrace us with support, compassion and their time. Time spent together with friends, family or even strangers is never wasted when we do it with compassion, love and open arms. I wonder if the people who created this charity are even aware of the difference they have made in so many lives by the simple act of sharing something they loved with others.
As I reflect on the last 16 months of my life, it has been one filled with pain, fear, anxiety and loss. But it has also been filled with love, compassion, new friendships formed as well as the re-kindling of old ones. It has been a year of having to accept that there are things I will no longer be able to do and that I have limitations. But, at the same time there are many opportunities open for me to fill those holes with something new and just as valuable and enriching. I can no longer hike the mountains, but I can walk along the river. And, not only can I walk the river, I can grab a fishing pole and learn a new way to embrace my love of nature. I may not ever be able to go back to the old Kathy I was 2 years ago but I can re-invent myself in a way that strengthens me and brings value to my life and others. I can live... fully...
If I wanted to send a message out to others who have also been diagnosed with MBC it would be this:
Don't give up Living! Don't let fear of the unknown guide your day to day decisions. Your life has value and it always will until your journey in this life is over. But, most of all... Do not let cancer steal away your joy and happiness. Cancer has a way of taking things away from us and we can't control what it does to our bodies. But cancer cannot have our spirit, our determination, or our ability to conquer and win all the small battles that come with this diagnosis.
As far as what time means to me now... my honest answer is that I no longer worry about how much time lies ahead for me. Primarily because time will run out for us all no matter who we are or what we do. I just want to be able to look back onto my life and say, I lived with no regrets.
Time is irrelevant for those who live for others. Because when you live to enrich someone else's life, you have no regrets. That is the one thing I have gained since my diagnosis. I feel so much joy when I am surrounded by selfless people. I don't have to find joy on my own because they bring it to me through their selfless acts. It is contagious and it makes me want to do the same.
It reminds me of the movie Pay it Forward... I have always loved it's simple message of how kindness is contagious. If only we all woke up every day with only one mission: To share love and kindness. Some people do this exceptionally well... I've had the honor of meeting quite a few of you. These are the true angels. They aren't up in the heavens out of reach... they are standing right beside us all of the time.