How do you turn the light on a terminal cancer diagnosis? How does it change you? Pen, heart, and paper, meet my shadows and my light.
I have many different answers to this question. I have this conversation regularly and it’s a tough topic because of the word “terminal” or “incurable”. I typically only share my feelings about this with people I love because its that hard. Its not something I enjoy talking about but when I remind myself what the purpose of this blog is, I remind myself its important to share the deepest parts of my mind and this diagnosis in order for it to serve its purpose. Putting my “pen to this paper”, or my “fingers to this keyboard” serves as my outlet to share the light but also share the darkness too. I have to let the shadows speak just as loud as the light does because I know I am not the only one; and so I write for so many of us who might be feeling this way.
I want to lead with this: I don’t expect everyone who reads this to live their life differently or with the perspective that I have and I don’t judge you for living in your unpopped bubble. The fact of the matter is, my bubble was popped 7 years ago and just when I thought it was safe to enter it again, I was quickly reminded that my life and purpose is not meant to fit inside of a bubble.
When I say my bubble has been popped, I’m referring to the one that you might occasionally sit in that says, “Oh, that would never happen to me. I’m a good person, I do good things, I love hard, God would never do that to me.” Trust me, I had that conversation with myself many times in life when I felt fear. As you read that, do you think that I deserved or that God chose to give me a terminal cancer diagnosis because I did something wrong in life? Probably not, but here I am. At times, I ask myself why did this happen to me. What did I do to deserve this? Those are questions I bet many people ask in life when traumatic events happen. Imagine that traumatic event happening over and over and over again. Thats what a terminal diagnosis feels like. Every morning I wake up to the same traumatic feeling. I wake up and I still have terminal cancer. It’s not going anywhere for the time being or until they find my magical cure. I have to tell myself, “I’m not gonna die today - so let’s make the best of it”. Every morning - the same trauma. Every morning, my house is still burning. Every morning, I get in a massive car accident. Every morning, someone breaks in to my house and points a gun at me. Trauma is trauma.
Here are my ghosts: I’ve planned my funeral more times that I want to admit. I’ve thought of the things I want to leave in the minds of those I love. I think of the last moments I’ve shared with people, and I wonder if I’d leave them with knowing how much I love them. I think of all of the things I want to do in life, and I make sure that I do them, or I try my very best. I have a lot of WHAT IF moments, a lot of tearful moments as these thoughts travel in and out of my mind. It’s hard to bring myself back from those thoughts but I eventually find my way. It’s a scary place to be, but for me, it’s also a harsh reality. I live my life in 3 month increments. I have no control whats happening inside of my body, and I fear it. I fear the moment I walk in to my Dr’s office and she tells me there is nothing else we can do and you have this much time left.
Wow, that was really hard to write, but this is my “pen to paper” moment. These are my raw thoughts and feelings. I have to honor them so here it goes.
I struggle between living my life to the fullest and being depressed in my bed. I struggle between wanting my friends and family to treat me like I’m “normal” but also wanting them to realize my time may be limited. I struggle with people telling me their problems and being the loving, full of advice friend and wanting to say, “really, thats what you’re going to complain about today, try having tumors in your back and facing your mortality every single day”. All of that being said, I ALWAYS come back to this: I don’t want to be treated like a sick cancer patient. I don’t want anyone to walk on egg shells for me, or not share their heart with me because they “feel bad” complaining to me. Those are the parts of me and my relationships that make me feel “normal”.
Everyone has a gauge for what they’re able to handle. I am not here to tell you your problems are less important than mine. I am here to share my journey and my heart with you. I am here to speak for those who might be too afraid to share their feelings. I am here to speak on behalf of those who may not even understand what or why certain thoughts consume them. I am sharing the darkness to hopefully give a little bit of light to those who might otherwise feel alone. Cancer is a lonely place. When you’re surrounded by the majority of people who don’t understand what it is you’re feeling, it can feel like you’re being suffocated. While everyone around you goes about their lives, we feel like we are standing still in a world that just keeps spinning around us. It’s a brain that never stops thinking, full of anxiety, playing tug of war with staying positive and feeling depressed. Sometimes I feel guilty for feeling sad, like I’m wasting valuable time or like my depression is feeding my tumors, but then also knowing it’s important to give myself the space to process those feelings. Sometimes I feel guilty or as if I am being judged for living my life, traveling, and experiencing all of the things this life has to offer. As I watch others dying from this awful disease, I teeter between having survivors guilt and wondering when my time will come—what will that look like. What will my family and friends have to see? Will it be quick? What will I look like? Most importantly, what legacy am I leaving here?
Apparently, God thought I was a freaking super hero because as I write this, I have no flipping idea how I get through a day. I mean, I do. I know he is there to catch me when I fall. I know he knows my heart, and I trust in his plan and purpose for me. I remind myself this is the path he wanted me to walk. Whether it’s because I was meant to be the hands here on earth that serve others through Pink Warrior Advocates, this blog, or if it’s to teach me how to truly appreciate and make the best out of this life—I don’t know. I just know this is where I am at in life and I have to accept it. I have to embrace it. I have to believe healing is happening inside of me both mentally AND physically. I have to choose hope—every. single. day.
I will end with this…
One might look at me, or any cancer patient, and feel bad for us. I am asking you not to. At least not for me. I don’t want you to feel bad for me. I don’t want that attention on me, personally. The best thing you can do, is live a purposeful life full of forgiveness, faith, belief, hope, and ADVENTURE!!!! Eliminate every opportunity of regret that you can. Leave people with words of love so that you never have to feel pain wishing you had said that one thing you fought yourself to say. Get rid of your pride. It serves no purpose here. Do that ONE thing you have always wanted to do. I may have been diagnosed with a terminal illness but the beauty behind that, is that I have been given the privilege to live fully and without regret. With this diagnosis, I feel as though I have been oddly given this “time” or this insane “reality” to choose what my legacy is. I’ve said it before and I will say it again: We are all terminal. No one is getting out of this world alive. Not you, not me. I might have this thing that says I have statistically this much time, which I can choose to see as a blessing or a curse. I choose to see it as a blessing because I can promise you, my life would have looked much different—my time with friends and family wouldn’t have been cherished as much as it has been. I never would have jumped out of a plane, or done half of the other things I ALWAYS wanted to do. I have a never-ending bucket list because it gives me something to look forward too—to live for. I think and feel at such a deeper level than I ever have in my entire life. So while some of this may have been hard to read and equally as hard to write, the truth of the matter is, this is my heart. This is my purpose. This is my truth. This is my life. It’s a life I will continue to live, feel, process, believe, hope, love, honor, and be grateful for. Read that last sentence again but read it slower.
I will scream and I will cry again, I will ask God “why me again”, I will stand in this spinning room alone while the world floats around me in their bubble. I’m ok with that. I’m at peace with that. At the end of the day, I have been so dang blessed. I am surrounded by love and prayer. I have the some pretty incredible
people to share this life with, and to share in those bucket lists moments with, and that is something I will never….EVER…take for granted.
These are my ghosts and as long as I bring light to them... and share my truth... I might just light a path for someone who can’t.
“What if I leave the light on
So the dark has a friend
If the ghost light is burning
We'll invite something in
Let the dark free her secrets
That she keeps swallowing
Let her borrow my voice now
What if darkness could sing
What would the dark say if she could” (Sara Bareilles)
She would say all the things that sit on her heart, on her mind, so the world could see the shadows, the light, the fears, the darkness, but find hope and inspiration in the midst of it all. She would offer her voice to those who are too afraid to share it. She is me, and this is my “heart on paper”.
1/31/2021 08:01:46 pm
Jen, wow. Beautifully written. A rare raw glimpse into the light and darkness. I don’t know if you’ll ever know how much you help others not just who have cancer but all of us. You give us the push to chase our dreams and fear less. Thank you for opening your heart time after time to beautifully illustrate your journey. The good, beautiful, inspirational, hard, dark, terrifying, every facet of it. Thank you.
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