Make no mistake – I am dying. 

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. 

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21 thoughts on “Make no mistake – I am dying. 

  1. I second that. No apologies for speaking your truth. Thank you for being open and real. May it lend some ease to you to be so.
    You are an inspiration to me because I know how disciplined you are to work to reframe your thoughts towards love and light as often as you do, even with the dark truth of your prognosis. This seems like this is one of those weeks/moments in which you are deeply feeling that reality.
    We are blessed to have you share whatever moments and feelings that you choose to with us, especially so the harder ones.
    May you always know the love that surrounds you, the love that you are and will always be. The beautiful light you are fills up that beautiful lad of yours. He will have the deep knowing that he was wanted and adored by his Mama, that is a gift you have given him already, like a light within, even though your time with him is precarious.
    So much love-
    XO

    Liked by 4 people

  2. There are just no words for how amazing you are! I think you are dealing with it the way you are because you share and because you don’t keep it bottled up! You are setting an amazing example for your son and giving him wonderful memories! Don’t ever give up – and we will keep the prayers coming every single day!!

    Liked by 1 person

  3. When I was growing up and complained about some insignificant little problem being unfair, my dad used to reply that life was unfair. At the time it was frustrating to hear, and I was too selfish to look at how “fairness” had impacted him in his life. His father died of lupus at 50 while he was off fighting WWII,he never met any of his grandparents because they all died young, and he himself was diagnosed with terminal colon cancer and given 3 months to live when he was in his early 40’s. From an early age he lived the notion that life was unpredictable and uncertain and often unkind. But he celebrated it like no one else I knew — until now. You celebrate in that same way. You understand life’s value and beauty in ways the rest of us don’t, and your constant message of love in the face of uncertainty is a gift to all of us who follow your struggles. Like my dad did, you make us see the value in each minute, each hour, each day, and each person we encounter on our journey through life. Thank you for that. As for my dad, he defied his prognosis and lived another 30 years. I credit that to prayer and love and his positive outlook. Life isn’t fair but sometimes it is surprisingly generous in its unpredictability. I wish the same outcome for you as for my dad. You’re y father’s fellow messenger of love and joy in a time of great darkness. You are a blessing to us all.

    Liked by 2 people

    1. Barbara, I have no words for your story. It is written so beautifully and with so much love. I hope to be just a small bit of the person that you describe. Like you, I feel very strongly that positivity and hope play a massive role in all of this. I know that treatment and scans are key but there is a lot to be said for attitude & prayers too. Thank you for sharing your words and kindness. ❤

      Like

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