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A Path I Never Chose
My heart is so damn heavy I can barely breathe around it. It’s not just sadness. It’s grief, it’s rage, it’s this crushing weight that shows up every morning when I wake up and remember, oh yeah, I’m still sick. I’m still losing.
It’s one step forward and two steps back, and I’m so tired of falling. With my DNA markers changing, and being triple negative, I don’t even get the same chances most people do. Starting out at stage 4, I have no chance of a cure. My fight has to be uglier. More aggressive. My body doesn’t get the “standard” options. It gets the desperate ones. And I’m the one who has to live in it, feel every side effect, feel every hope get ripped away.
I had a good scan. God, I had a good scan. For a few days I let myself be hopeful. I smiled without forcing it. I made plans in my head. I let myself believe. Then the next scan came. It’s in my neck now. My chest. It’s spreading. Just like that. Right after I let my guard down. The crash from that kind of hope is violent. It knocked the air out of me. The sparkle in my eyes didn’t fade, It went out. I saw it die in the mirror and I couldn’t do a thing to stop it.
I’ve been smiling an being hopeful for so long I forgot what it feels like to just break down. I say “I’m okay.” I make jokes in the infusion room. All because I can’t stand the idea of the people I love hurting because of me. I’d rather choke on my own pain than see it on their faces. But I can’t do it anymore. I’m not okay. I’m not strong. I’m not brave. I’m a 36 year old woman who is terrified and furious and so, so sad. Nothing is going how I planned. Not one thing. And I hate it. I hate this body. I hate these scans. I hate that hope feels like a trap now.
I’m scared in a way I didn’t know a person could be scared. It’s bone deep. It’s every-cell-in-my-body scared. Because this isn’t a bad chapter. This feels like the end of the book, and nobody asked me if I was ready to close it. I keep screaming “why me” into the dark and the dark just swallows it. No answer. No reason. Just this. This path I never would have chosen. This path that’s chewing me up and spitting me out. Over and over again.
My body hurts in languages I don’t even have words for. Fire. Lead. Lightning. Empty. And then there’s the other pain, the one that lives in my soul. The one that happens when it’s quiet and I realize nobody, nobody, can feel this the way I do. It’s the loneliest thing I’ve ever known. I’m trapped inside a body that declared war on me, with a mind that keeps replaying every dream I won’t get to live.
So if I’m mean, I’m sorry. If I’m distant, I’m sorry. If I don’t make sense, if I snap, if I go completely silent for days, or just start crying out of no where...please don’t take it personal. I’m drowning. I’m grieving my own life while I’m still in it. I’m mourning a future that was supposed to be mine. Some days the anger is the only thing keeping me warm because everything else feels so cold.
I don’t understand. I don’t accept it. And I am so tired of pretending I’m some warrior. Most days I’m just a broken, terrified human who wants a cure she wont get. Who wants to stop counting tumors and start laughing again.
I had to get this out of my head. My head is a dangerous neighborhood right now and I can’t live there alone anymore. So I thank everyone who comments on my posts!
If you care about me, if you hear me stay. Even when I’m so hard to deal with. Even when I’m not the me you remember. Thank you for witnessing this with me. Thank you for not looking away. This is as real as it gets. I’m doing the best I can with a heart that’s shattered and a body that won’t stop taking things from me. I tried so hard to stay ten toes down I swear I heard "wow your so positive". "Your a inspiration". Until now, and I'm so sorry I let the light in me burn out.
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@shellyk89
How beautifully you write 🙏 I am in awe how beautiful your post is with all its rawness and expression of thoughts that we’re encouraged not to feel.
Thank you for sharing your experience with us. It broke my heart and I pray you find peaceful and joyful moments.
Your post has helped me to understand so much better those who feel as you do. I’m grateful to you. My experience has been so very different that I struggle sometimes to understand. My stage 4 appendix cancer diagnosis in my 50s when I was riding the peak of my career wave had a very dire prognosis. For some reason I wasn’t angry. For some reason I found it relatively easy to accept my time was likely to be short. For some reason I got enormous peace once I made peace with that. Who knows why I’m still here 5 years later after hectic treatment, in remission and with good quality of life - for now. (It’s not curable and it will come back).
I do feel incredible survivors guilt for those deserving of what I’ve been granted 💔
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10 Reactions@isadora2021 I'm happy for you finding peace. My sister made peace with her fate though it was a cancer that I survived 20 years ago, and she only had 3. I experienced the same guilt after my brother died from cancer 2-years after I had survived. This journey we call life is wondrously beautiful, yet often brutal. It appears that our expectations can make a difference in how we handle it.
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5 Reactions@56tburd Thank you. Although I do have peace I still get Scanxiety waiting for my scan and blood results. I’ve recently changed to 6 monthly.
I’m so sorry for the loss of your sister and brother. That’s tough.
I really can’t explain why I have been able to approach my cancer as I have. Maybe because my grandmother was murdered. Or because my mother died from small cell lung cancer less than 30 days after diagnosis (we thought she had flu). Perhaps having experienced those terrible things somehow helped. I really don’t know 🤷♀️
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6 ReactionsWow Shelley, I can say I understand because I am stage four also I’m fighting the same demons you are and it is impossible to completely express someone else what this disease does to us mentally physically spiritually. All I can say to you is that yes, I am listening, I hear you, I can see you , my heart breaks for you. Been so long since I have let myself cry. Your words and the images that they invoke just bring me to tears. I will be starting my last bucket list trip to Portland, Oregon to start my screening for death with dignity option. I have to do it now while I still have some energy to do it.. my nightmare would be laying in a hospital bed just waiting to die. While my organs start failing one by one. I will try and live as long as I can, but when it gets too much, I will have that option. That of in itself brings me a little comfort. I hate to end this post with all doom and gloom, but we are all tasked with the process of dying. How we do it is different for all of us. Just live minute to minute day to day or whatever you can manage at any given time. Your brother in arms. David.
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7 Reactions@kono8888
Even before my “aggressive cancer” diagnosis I was a huge proponent of death with dignity, so I applaud your planning. It is an opportunity to take control of such an important aspect of life. I am not afraid of death itself, but I am afraid of dying in pain and with loss of dignity. To all of us who live with scanxiety, fear, side effects, pain, and the recognition that death is not just some nebulous, way-in-the-future event, thank you for the opportunity of sharing. These are not conversations that those outside of our circumstances
want to have. May you all find peace, whatever that means for you.
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14 Reactions@isadora2021 the uncertainties that come with cancer are daunting….each of us are different..as for me, i put my legal things and finances together, then must take it one step at a time.anything good that happens is a win, and they can add up and give us strength..for me, i try to bypass the guilt by helping other patients in a variety of ways— I learned that during my time in the hospital.
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12 Reactions@ffr thank you for your kind words. Not many of us think the same way. Some good intentioned people find it easy to bring in religion to the mix but we all have to carve our own path to our eventual destination. Thank you for respecting my choice. just to be clear I am not rushing out to Oregon to rush through the process. I am going to squeeze the toothpaste tube of life to the absolute end. When I can no longer bear the suffering. That is when I will invoke my right to lay down my life .
Respectfully, David
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9 Reactions@nycmusic Yes! We are all so different.
Acceptance has always been such a healing power in whatever life has thrown at me, and then doing the best with the hand I’ve got.
It continues to be super hard seeing young people and parents of young people not surviving cancer.
Life is strange. I never asked “why me” when I got diagnosed with stage 4 but I can’t help those thoughts when I see others. Life can be such a mystery. Helping others certainly does help. And knowing too there are others in our compassionate cancer community who will be willing to help me when I need it.
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8 Reactions@isadora2021 what a wonderful and true post, so well said. Thank you and best wishes for your health.
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4 Reactions@kono8888
Keep squeezing!!
I will, too.
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6 Reactions