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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.

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ShellyGrayWings | @shellyk89 | May 3 6:51pm
In reply to @celia16 "@shellyk89 , what a powerful post! I’m so sorry that you are going through this. You’re..." + (show)
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@shellyk89 , what a powerful post! I’m so sorry that you are going through this. You’re right. It’s not fair, right or acceptable. I don’t understand how it happens….and, I’ve never understood why a person who has a major illness must be a warrior. I’m not in your situation so can’t say I understand. I can say that you are heard. I do hear your pain and frustration. I don’t have advice except to keep on posting. I’ll look forward to your updates. Sending positive thoughts for your day ahead.

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@celia16
No advice needed. Just being heard is huge. I’ll keep posting. Thank you for looking for my updates and for the positive thoughts today. They matter to me

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ShellyGrayWings | @shellyk89 | May 3 7:07pm
In reply to @dbamos1945 "@shellyk89: I’ve been reading your posts for awhile. Since no one is in your shoes I..." + (show)
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@shellyk89: I’ve been reading your posts for awhile. Since no one is in your shoes I can’t say “I understand”, but with stage 4 Neuroendocrine cancer metastasized to liver, those thoughts and words you write do have meaning to me. I wish that I had the power to infuse you with a big helping of love, peace and acceptance of where you are on this journey called life. We all come into this world alone and not one of us will make it out alive.
For understanding we cannot realize, we have been told our prognosis has limited time ahead. The rest of the world is not guaranteed a long lovely life but lives everyday expecting they will live forever. We now know they are the lucky ones… as they make future plans, goals and expectations for a better life to come. They don’t have to carry our burdens and can remain in a “Polly-Anna world”. They can be oblivious to PAIN and complain about frivolous hang-nail discomforts of life.
I wish I could click my heels and grant you time to live life deliriously happy and satisfied ‘til you are old and grey like me. If it helps you, please know I care how you are feeling. I would love to bake some cookies and share a pot of tea with you… sharing many laughs, tears, rage or any of the human emotions we have all bottled up inside. I want you to open your heart and consider the goodness you see today. Maybe take a walk around your yard and let the beauty of nature clear the sadness out of your soul.
We have NO CONTROL over much that happens to our bodies, we only have control over how we REACT.
Rubyslippers I send you my very best thoughts & will keep you close in my heart. You will never be alone.
I am here. Bette dbamos1945

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@dbamos1945 Bette, I had to read this twice.

Thank you for being here, and for saying the part about the “Polly-Anna world” out loud. Stage 4 to stage 4 — you do understand. The way you described the divide between us and the rest of the world… that’s it. That’s exactly it.

I’m so sorry about your neuroendocrine cancer in your liver. I wouldn’t wish this knowing — the limited time, the way it strips the future down to right now — on anyone. But I’m grateful you’re here, and that my words found you.

I would love that pot of tea and cookies more than you know. Laughs, tears, rage — I’ve got all of those bottled up too. You’ve already infused me with love just by writing this.

I’ll take that walk around my yard today and look for the goodness. Thank you for reminding me I have control over how I react, even when I have no control over this body.

Rubyslippers sees you, Bette. I’m here too. You’re not alone either. Sending you love right back.

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dbamos1945 | @dbamos1945 | May 5 12:12am
In reply to @shellyk89 "@dbamos1945 Bette, I had to read this twice. Thank you for being here, and for saying..." + (show)
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@dbamos1945 Bette, I had to read this twice.

Thank you for being here, and for saying the part about the “Polly-Anna world” out loud. Stage 4 to stage 4 — you do understand. The way you described the divide between us and the rest of the world… that’s it. That’s exactly it.

I’m so sorry about your neuroendocrine cancer in your liver. I wouldn’t wish this knowing — the limited time, the way it strips the future down to right now — on anyone. But I’m grateful you’re here, and that my words found you.

I would love that pot of tea and cookies more than you know. Laughs, tears, rage — I’ve got all of those bottled up too. You’ve already infused me with love just by writing this.

I’ll take that walk around my yard today and look for the goodness. Thank you for reminding me I have control over how I react, even when I have no control over this body.

Rubyslippers sees you, Bette. I’m here too. You’re not alone either. Sending you love right back.

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@shellyk89: You are thought of often with love and caring. It’s so helpful to me to have found a kindred spirit to share honest thoughts and fears… you are so very special! Be kind to yourself today and feel my gentle hugs. Bette

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ShellyGrayWings | @shellyk89 | May 5 12:23am
In reply to @rashida "@shellyk89 I feel for you. I am going to keep you in my prayers. I believe..." + (show)
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@shellyk89 I feel for you. I am going to keep you in my prayers. I believe prayer is powerful. Prayer may or may not heal you physically but it definitely can heal you spiritually. I am praying that you will feel in your heart the presence of God and His peace that is beyond understanding.

“If the mountain seems too big today

then climb a hill instead

if the morning brings you sadness
it's ok to stay in bed

if the day ahead weighs heavy

and your plans feel like a curse

there's no shame in rearranging

don't make yourself feel worse

if a shower stings like needles

and a bath feels like you'll drown

if you haven't washed your hair for days

don't throw away your crown
a day is not a lifetime

a rest is not defeat

don't think of it as failure

just a quiet, kind retreat

it's ok to take a moment

from an anxious, fractured mind

the world will not stop turning

while you get realigned

the mountain will still be there

when you want to try again

you can climb it in your own time

just love yourself til then.”

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@rashida I love what you said about healing. Physically, things are still day by day, but spiritually, your words helped me breathe a little deeper. That line about God’s peace that is beyond understanding is exactly what I’m asking for, and somehow I can feel it a bit more because you prayed it over me.

The poem you shared is beautiful. “A day is not a lifetime, a rest is not defeat” is going to stay with me. Some days the mountain really does feel too big, and it helps to be reminded that it’s okay to choose the hill, to rest, to realign. When you said be gentle with myself, and I didn’t realize how much I needed to hear that

So thank you. For the prayers, for the wisdom, for seeing me and meeting me right where I am. I feel less alone tonight because of you. I’m praying too — for peace and strength for both of us, and that we’ll each climb our mountains in our own time.

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nycmusic | @nycmusic | May 5 8:18am

My heart and prayers go right out to you…you are facing really hard things and are understandibly really feeling a lot of hurt of all kinds…here you do matter and your voice is heard…just being able to express things and being cared about is very important…I do sense in you a desire to find some joy—keep that alive…celebrate anything good , no matter how small, one tiny step at a time…sending warm hugs your way.

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kono8888 | @kono8888 | May 5 8:35pm

Hi Shelley, I feel your pain, anguish, and the need for just a little respite from your mind and your body. I wish I could say some words, wisdom to console you, but I’m sure you have heard it all before. Therefore, I will forgo the clichés and just tell you that you are not alone with your tormenting thoughts . Your post to me really connected in a deep w ay. I feel you truly understand the waters. We are drowning in. Just know that I am thinking of you. And trying to manifest a little bit of peace for you. I want to be your friend and a brother in arms. I have decided to start my drive to Portland, Oregon on May 28.. I plan on writing a travel diary and taking some pictures on the way cataloging that I was here. Sometimes that is all we have just being here. I see you too.. respectfully David

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wdytys | @wdytys | May 10 5:08pm

I am very touched by what you have written. Your writing reminds me of Suleika Jaouad‘s (Between Two Kingdoms: A Memoir of a Life Interrupted) who was diagnosed with cancer in her twenties. She said that keeping a journal helped her, and since you are so good at expressing how you feel ( I really admire your writing) that might be a way to find some peace. I will pray that God gives you strength and peace.

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GetWellSoon26 | @vijay26 | May 11 8:42am

Oh, Shelley dear! Hang in there. I do not have any advice for you, but ask you to keep your faith and fight strong.
There are so many people, who can understand what you are going thru, including me, but yet your personal pain and suffering feels much harder to deal with for most of us.
I will keep you in my prayers, hopefully things will get better soon.
Good luck and God bless you dear.
VJ

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GetWellSoon26 | @vijay26 | May 11 8:56am

You may want to talk to a psychologist or a Psychiatrist about all these stuff and get help as well.
In my opinion, you need extra support from a professional care team, in addition to us giving our lay support. Don't give up. In my 75 yrs, I have gone thru so much and when I read your notes, my problems felt like nothing, compared to yours.
So sorry that you are going thru all these by yourself at a very young age.
I will pray harder for you to Holy Mary, Mother of God to help you ease your pain and suffering.
VJ

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dbamos1945 | @dbamos1945 | May 11 7:13pm
In reply to @shellyk89 "@rashida I love what you said about healing. Physically, things are still day by day, but..." + (show)
Profile picture for ShellyGrayWings @shellyk89

@rashida I love what you said about healing. Physically, things are still day by day, but spiritually, your words helped me breathe a little deeper. That line about God’s peace that is beyond understanding is exactly what I’m asking for, and somehow I can feel it a bit more because you prayed it over me.

The poem you shared is beautiful. “A day is not a lifetime, a rest is not defeat” is going to stay with me. Some days the mountain really does feel too big, and it helps to be reminded that it’s okay to choose the hill, to rest, to realign. When you said be gentle with myself, and I didn’t realize how much I needed to hear that

So thank you. For the prayers, for the wisdom, for seeing me and meeting me right where I am. I feel less alone tonight because of you. I’m praying too — for peace and strength for both of us, and that we’ll each climb our mountains in our own time.

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@shellyk89: You were on my mind yesterday, Mother’s Day… wishing you a glorious day with your family. I hope they spoiled you thoroughly! I celebrated YOU and what a special human you are! You might not have dwelt on this thought, but by posting your honest, raw emotions and sharing your inner uncertainties, you have touched so many of us. Thank you Shelly for being YOU!!! Bette

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