Late last night, Matt got called in to go to work. They needed him to go to Showlow (my life is weird.) So he headed out and for some insane reason I decided that would be a good time to confront my fear of the ileostomy bag.
This was a mistake of colossal proportions.
I have stayed intentionally uneducated because I wasn't ready to face the whole poop bag idea. But I had a really great week. Fantastic even. My doctors told me I would be feeling pretty gross for a couple of weeks as the chemo made it's way out of my system and it would take the burn about 2-3 weeks to heal. I was expecting August to be pretty awful. So when, after 4 days or so, my burn was healed and I felt absolutely no lingering effects from the chemo, I was overjoyed. Yay! I know it's because of all the prayers being offered on my behalf. I have been on cloud 9 all week.
So I thought to myself, I am ready. I can face what is coming next.
If the surgeon is able to save enough of my rectum after he removes the tumor, I will have a temporary ileostomy bag. If he is unable to save my rectum, I will have a permanent colostomy bag.
I am not ready to accept a colostomy. I am praying for an ileostomy.
I did some research and then I had the brilliant/diabolical thought, "I'll check out youtube."
I found this video. https://www.youtube.com/watch?v=l9PYMfqNGm0
First of all, let me say that this chick is awesome. She is so brave and has all these great and super educational videos about ileostomy bags. I'm sure by the time I get to surgery (no actual date yet, likely the first week of September) I will have watched all of her videos. She is a rockstar.
I ALMOST don't want you to click on that link. I don't want any of you to know what an ileostomy bag is or looks like. I don't want you to know what I'm going to have to do because it's seriously so gross to me. The first time you see me, after my surgery, I don't want you knowing what has happened. And what my new reality is.
Not that you will ever see me. I'm seriously not leaving my house.
See for a lot of people, a bag is a new lease on life. They have colitis or IBS or something that makes life miserable. They have all kinds of stomach problems and are used to having all kinds of issues. So a bag is awesome for them because they have all this freedom and pain relief.
For me, I have no pain. I had no pain. I have stage 3 cancer but I only had 1 out of 12 symptoms of colorectal cancer. I had no digestion issues, no stomach problems. I have this thing inside my body that I can't see and that really didn't effect my life one bit. I had blood in my stool but seriously, so what. I don't feel like anything is wrong with me. I know there is, but I feel healthy.
I started watching the video and from the first second I was horrified. The bag is so big! And that is a 'clear' bag so what we are looking at is her waste. At 1:59 I screamed. Literally screamed. And I started crying like I haven't cried ever in my life. And then I started having a panic attack.
I don't want this to be happening to me. I DON'T WANT THIS TO BE HAPPENING TO ME. I want to run away. I want this all to stop and for me to wake up and this not to be my life. I DON'T WANT THIS. Why is this happening? What did I do wrong? I feel like I'm being punished. God knows all my weaknesses, all the secret thoughts that no one else knows, and he is punishing me for those moments of narcissism, vanity, pride. Why else would this happen?! I'm going to have my poop coming out of a HOLE IN MY STOMACH. It is going to leak. I'm going to have to empty it once an hour. It will fill up with gas and balloon up. I will have to empty it multiple times during the night. I will carry around my crap everywhere I go. So freaking sexy. Can't wait for Matt to see me like that. Fantastic. DO YOU UNDERSTAND THAT THIS IS AWFUL. I'm NOT BRAVE. I'm terrified. I'm devastated. I'm disgusted. I can't do this. I can't. You know what else I can't do? I can't stop crying. All these months of holding it in, of smiling through the horror, and it's all coming out. This is horrific.
Yes I want to live. I will do anything as long as I get to live and raise my children. But do you understand, I'm mad that I have to do this AT ALL. I'm mad, this is unfair. This is unfair that I as I'm putting my babies to sleep at night, as I'm singing them a lullaby I'm thinking in my head "If something happens and I die, please please PLEASE remember me. Remember this moment, remember how much I love you. Please know how much I was willing to go through, please know that I wanted nothing more than to live." IT IS WRONG THAT I HAVE TO THINK THOSE THINGS. Doesn't this just feel so wrong to you? What on earth did I do to deserve this? I don't understand. I will never understand.
I haven't lost my faith. I have been comforted and helped along at every step of this stupid journey. I just don't understand why I have to do this in the first place. Am I allowed to feel that way? Should I even post this? This is me today. Today I don't want this to be happening to me. I know that I have all kinds of support and all kinds of help. I know that all it will take for me to feel better is to get on my knees and talk to my Father. But today I am mad that I'm the girl that needs all this support and mad that I'm the girl that can't stop crying.
I don't want to talk about feeling this way. If you see me, don't talk to me about this post. I am struggling with this next step. I took the comments option off of here - I don't' want to hear about how a bag isn't that big of a deal. It's a big deal to me. This is hard for me. When I said Matt might have to cuff me to get me to surgery, I wasn't joking. I am terrified. Who would voluntarily do this to their body?! Not excited.
