Those words are not easy to type and I do not use them lightly. But the reality is that I am dying. I have been given a prognosis that is the national average for my survivability based on my diagnosis. I have not shared that broadly because I honesty cannot wrap my head around it and because I hope & I pray & I visit all of these places so that I can try to outlive the time that I have been given. But at the end of the day, my disease is terminal. It is probable – and likely – that I will not see my son attend his first day of kindergarten.
The other day someone mentioned that they are considering stopping treatment. This person is Stage 4, undergoing maintenance treatment that will never stop and that thankfully has been working for about 2 years. But she struggles with the anger behind this diagnosis and the frustration that she has been dealt a bad hand. My heart hurts for her. I actually have a difficult time wrapping my head around that because I don’t have the option of maintenance treatment. And I can’t fathom giving up.
Despite this prognosis, I am striving for normalcy. I work hard, I bring my son to school everyday, I visit with friends & family, I juggle the standard treatments & side effects along with the sudden or urgent needs and through all of this, I make plans for the future. Will I be here to see these plans through? No one knows. But that doesn’t mean that I’m not going to make those plans and get excited for what’s to come.
It helps me to share my story openly and to be honest about my feelings. It helps me to find the joy along the way and to add a small bit of humor to an otherwise unpleasant story. It helps me to just be me. Maybe this sentiment is selfish of me.
If I were to look at the facts alone, they are grim, scary, concerning and well, actually quite terrifying. I continously have progression while simultaneously having stability in other areas. I have side effects from treatment, prescriptions and cancer itself. I struggle with udder exhaustion, to the point that I literally force my eyes to stay open while trying not to let anxiety or fear take over when it is always knocking on my door.
And it never ends. Any of it. I will, quite literally, take some sort of treatment until the day that I leave this earth.
So this is my reality. This is just a teeny-tiny snippet of what it means to have a terminal diagnosis. I could very easily wrap myself up in a blanket, lay down in the fetal position, close my eyes and give up. But that’s NOT ME.
I want to live. Yes, I have bad days like yesterday where I cry most of the night. But then I pick myself up, wipe away the tears and move on. Because I am here. I am blessed with the gift of today and I don’t want to waste it. I want my son to remember his momma full of love and life. I don’t want him to remember me sick.
I’m sorry if this post upsets anyone and I’m sorry if it’s hard to hear. But this is my life.
I will continue to choose life and love and joy. I will not give in or give up or lay down – to this disease, to any side effects or to anyone who may think that I’m not actually sick.
I love you all. Continue to spread love and don’t ever let anyone steal your joy.