A Path I Never Chose

Posted by ShellyGrayWings @shellyk89, Apr 29 7:31pm

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.

Interested in more discussions like this? Go to the Cancer: Managing Symptoms Support Group.

Shelly, my dear, you are not alone. I know it may feel like it, and the pain and anger is justified, but you are not alone.

I deal daily, too, with both physical pain (24x7 - spinal cord tumor '20), and the emotional/mental pain of a life planned that will never be lived. We work so hard, for so long, to build toward something, and then practically overnight fate can rip it all away, and deal us a new hand, one we didn't ask for. It's not fair, and we were stupid to think life would be. It's ok to be angry about that.

So we take it one step at a time, one day at a time, one appointment at a time. Even when the end-game is apparent, we still have this day - one more day - to find some brightness somewhere in this world. I intentionally look for something positive, and make myself smile about it. (I was at the hospital last week, and hallways were lined with local children's artwork. Made me smile...)

Wishing you comfort and blessings. And know you are not alone. Peace.

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Profile picture for sabwal @sabwal

Your words are sublime - were you a writer before all of this? If not, the brutal experience has sharpened your skills to communicate exactly what you are experiencing and helps me prepare for my future in a big way. I'm at the very early part of this journey - I know that my cancer is rare and aggressive. Only my husband knows. I don't want to upset anybody - the thought of having to tell my mom crushes me instantly. She lives far away and has been our family's caregiver. I'm trying to make big decisions now before I feel pressure to succumb to paths I don't believe will do many any real good. I'm anticipating a lot of pressure to do everything possible, even when all the reports show that chemo and radiation have minimal impact. Recurrence is certain. In some ways, I'm hoping the CT scan shows that it's already too late, so I can just get on with palliative care and avoid the really tough stuff. Ugh.

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@sabwal Pulitzer-Prize winner Paul Watson has a Substack where he ponders just how far to continue treatments, whether it's wrong not to pursue every possible avenue, despite the dim prognosis...

"I am not suicidal. I love life. I'm not choosing death. I've just decided to stopped running away from it."

We have choices in life. Wishing you peace and comfort.

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Profile picture for duanetx @duanetx

@sabwal Pulitzer-Prize winner Paul Watson has a Substack where he ponders just how far to continue treatments, whether it's wrong not to pursue every possible avenue, despite the dim prognosis...

"I am not suicidal. I love life. I'm not choosing death. I've just decided to stopped running away from it."

We have choices in life. Wishing you peace and comfort.

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@duanetx Do you have a link to it? I'm actually off all social media including Substack. But if I can open a link, that would be helpful. If not, no worries - I can pursue it if need be 😉

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Am so sorry for what you are going through. I've survived two stage 4 cancers
and now dealing with damage treatments have caused to internal organs.

I've been in very dark places. Just after a recent heart procedure I had
and out of body experience where I was looking down at my body and internal
organs and my spirit said it was tired and wanted to leave this sick body.
This has troubled me, but I've spoken about it to others which has helped some.
At times for the past several years I've felt hopeless.
I understand when it has been just TOO MUCH.

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Profile picture for sabwal @sabwal

Your words are sublime - were you a writer before all of this? If not, the brutal experience has sharpened your skills to communicate exactly what you are experiencing and helps me prepare for my future in a big way. I'm at the very early part of this journey - I know that my cancer is rare and aggressive. Only my husband knows. I don't want to upset anybody - the thought of having to tell my mom crushes me instantly. She lives far away and has been our family's caregiver. I'm trying to make big decisions now before I feel pressure to succumb to paths I don't believe will do many any real good. I'm anticipating a lot of pressure to do everything possible, even when all the reports show that chemo and radiation have minimal impact. Recurrence is certain. In some ways, I'm hoping the CT scan shows that it's already too late, so I can just get on with palliative care and avoid the really tough stuff. Ugh.

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@sabwal I have two questions for you. Is it for your mother's sake or yours? Would you want to know? We don't want to be responsible for causing grief in others, but it is unavoidable when they love us. Often, we find out too late that loved ones were faced with challenges they tried to handle on their own. The guilt of not being there for them can be challenging, especially compounded with grief. I wish you well on your journey and hope you are the exception to the rule.

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Profile picture for sabwal @sabwal

@duanetx Do you have a link to it? I'm actually off all social media including Substack. But if I can open a link, that would be helpful. If not, no worries - I can pursue it if need be 😉

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@sabwal
I hear ya', I'm off *most* socials, never was a fan. But here's Mr. Watson's substack - paulrwatson . substack . com (had to disguise the link, "new user" and all.

He's got less than a dozen posts, I'd recommend reading chronologically (old to new).

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Profile picture for 56tburd @56tburd

@sabwal I have two questions for you. Is it for your mother's sake or yours? Would you want to know? We don't want to be responsible for causing grief in others, but it is unavoidable when they love us. Often, we find out too late that loved ones were faced with challenges they tried to handle on their own. The guilt of not being there for them can be challenging, especially compounded with grief. I wish you well on your journey and hope you are the exception to the rule.

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@56tburd my mom was a nurse & carried the burden of caring for & advocating for her siblings with cancer. She has survived 2 kinds as well. We have ATM mutation & she holds guilt for me having it. She lives far away & I can't bear for her to hear the news alone. She can't travel. My hope is to have the hysterectomy & recover well enough to fly to see her. To tell her in person & grieve together.
I'm trying to spare her. I am misguided?

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Profile picture for sabwal @sabwal

@56tburd my mom was a nurse & carried the burden of caring for & advocating for her siblings with cancer. She has survived 2 kinds as well. We have ATM mutation & she holds guilt for me having it. She lives far away & I can't bear for her to hear the news alone. She can't travel. My hope is to have the hysterectomy & recover well enough to fly to see her. To tell her in person & grieve together.
I'm trying to spare her. I am misguided?

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@sabwal you are the one most equipped to determine that. I actually understand your concerns. After my brother passed away from cancer, the last thing I wanted to do is tell my elderly mother of my health concerns. On the other hand, I regret not being there for my brother when I had no idea how bad it was. Good luck!

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