I am a huge fan of summer. From the days sailing my little sailboat with friends, lifeguarding and teaching swimming lessons as a kid to the carefree endless days on the shore of Lake Michigan with our boys, adventures and traveling all over the country to visit friends and family. I have always squeezed every bit of fun out of each summer day. Wake up early for a run and put the kids to bed dirty and grimy, smelling like bug spray and s’mores… only to wake up and do it all again… But, this year I am having a hard time getting into summer. Honestly, I’m having a hard time getting into life in general.
Living with a disease that has no cure is emotionally and physically exhausting. When I had breast cancer the first time there was a plan and a goal and so much hope. We were all fighting to get to the finish line and “get back to life.” I was a girl on a mission. Life was so amazing and full of joy for all I had conquered. When you are living with a disease that has no cure there is an overwhelming feeling of being trapped. suffocating. In a way the finish line is death. Or a cure. Unfortunately one seems more realistic than the other. It’s the continual struggle I have – facing the fear of the unknown and thinking of a day when I won’t be here. When people will sit around the Hope Scarves office with pictures of me hanging on the wall and talk about “what would Lara say about this…” Thinking how Bennett says “Mommmmmm!!!!! I need you!” about 20 times a day and thinking about the day when I won’t be here to help him with whatever it is he “needs.” It is really hard to live in the present when the fears of the future consume me. What I wouldn’t give for a plan or some kind of reassurance.
So, what I try to do is live in the present. To be aware that in the moment, I am here right now to help B with whatever he “needs.” But, I can’t really explain how frustrating living like this is. I never knew anything like it until this became my reality. I find myself surrounded by friends, laughing and joking and yet so alone. I have been blessed with new friends who “get it” and are living with metastatic disease. They have become a wonderful support system for me as I navigate this new reality. It’s just that I DON’T want to navigate this new reality. I just want my old, happy life back. And sometimes the anger and the jealousy of everyone else moving on with life is more than I can bare. I sink into the drivers seat of my car after day camp drop off with tears in my eyes and slam my hands on the steering wheel as I think- “How can this be happening?” Acceptance is on-going. Also is letting myself believe in possibility. We don’t know what will happen and I’m trying to allow myself to be hopeful that what will happen is going to be beautiful and full of life. That I might have a lot of time to live and love and raise our boys with Jay. That my body will fight this cancer and hold it off… Then, there is the right now… which is reality. This is all exhausting.
But, when I look at my current reality in this moment I am reminded by my amazing 3 boys, friends, our puppy Keeper, sunshine and God that we do have a happy life. That right now I have so many blessings. There isn’t anything holding us back from the fun we’ve had before stage 4. We are happy… we just aren’t carefree.
So, I balance all these feelings- fear, isolation, anger, joy, hope. And, we make life as normal as possible for our family. I pour myself into my work at Hope Scarves, I find time to nurture my soul. I eat healthy and I also let myself enjoy a nice glass of wine on a summer evening. I enjoy time with by 3 boys, “Team Mac.” I spend time with friends and engage in life. I research and learn as much as I can about my disease. I hold on to as much of the old “Lara” as I can in the new normal.
Pet scan next Thursday, June 19th. This will show us if the cancer is spreading or responding to treatment. Then, we will make a plan for the next 3 months- either changing treatment or holding steady with current plan. Regardless, the next 3 months will include climbing sand dunes, fly fishing on the Brule River, cannon balls, oberon, sailing on the big lake and… fear, uncertainty and sadness. That’s life with metastatic disease.
happy summer…
Lara
I wish I could just enjoy the moments and laughter with the confidence that this is one summer in a long line of summers to come together. That jay and I will walk the beach holding hands 20 years from now and that I will see our boys as men. I know it’s not guaranteed for anyone, but it’s especially hard for me. I just can’t help but wonder when will this feeling good end, when will I face toxic treatments that keep me from doing the things I love and when will I run out of treatments… It’s all so surreal in the midst of the happiness I feel most of the day. Yet, it’s our reality now. This balance between just having fun and treasuring the moment because you don’t know how many more we will have together. It’s an odd way of living. But I’m figuring it out. Most of all- we are living life to the fullest. Squeezing every bit out of each sweet summer day in our yellow cottage on the shore of Lake Michigan. Life is good.
But, I have cancer. I will never again feel the strength and joy of being in remission. Of being “cancer free” of being “done with treatment” of “getting back to life” like so many cancer patients talk. The steps we take now are holding off the cancer. Maybe for 3 months, maybe even a year, maybe more. It’s settling into this reality and the unknown that has me nervous to celebrate. How I yearn for someone to say- we can solve this or this is what we need to do to make you well.