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This having a Stoma

I asked Lovely Lauren why I can’t have the recipe that works for my pain.  She said a whole lot of stuff that all made sense except that it’s the first day post-surgery.  But I believe her.  “They want to get you off opioids right away.”  Just so you know, I don’t feel like I’m “on” opioids and it was startling that they want to get me off them less than 24 hrs. post-surgery. She remarked that my pain was better, and it seemed to be tolerable.  I guess she’s right.  As long as I’m on opioids and a muscle relaxant and blah blah blah.    I get it.

This having a stoma thing is a way bigger deal than I could’ve imagined, and I imagined it was a pretty big deal.  My body doesn’t feel like my body, at least when I see it.  I know this will change but right now it’s really hard to grasp.  I have to wonder if I made the time and space for Ted to have this experience when he got his.  I guess I can’t compare because things were so different.  We were so under water with such young kids. And so scared by the enormity of Ted’s diagnosis. I remember one of the first days Ted was home.  We had a hospital bed upstairs in our old house.  It was a great big room and I slept on a single mattress/boxspring on the floor on the other side of the room.  I was changing his bag and dressing his still open extra-long wound.  We were both in tears because things weren’t going smoothly.  But on the other side of the room the kids were jumping and bouncing on the bed, screaming and laughing hysterically with pure joy.  I remember it feeling very profound.  All this grief and fear, and pure joyful innocence.”  Holding both of those experiences in the same moment with my little family…  It was something else.  It really was.  It shifted something in my cells.

But things worked out.  They did.  And good things happened, too.  One of the most amazing things the Universe gifted us during that time was a woman named, Rose.  She was exactly like Mary Poppins, if Mary Poppins knew nothing about children or cooking.  Rose saved us.  We met her at a park when she was taking care of someone else’s kids.  Rose is from Britain and spent years traveling the world. She’d come to America assuming she could pick up waitressing gigs or bartending gigs.  That turned out to be impossible so through a friend she started some babysitting.  She was clear with me, “I don’t really know kids, but I like them”.  That was good enough for me.  I needed someone who could be with the kids but also be comfortable with helping Ted out if he needed something.  And she was amazing.  She folded right into our family. She worked with us nearly every day.  And she worked so hard.  Honestly there were days she looked as tired as me.  Right when Ted was about well enough to start helping with the kids, her visa was up, and she left. She stays in touch and remembers our birthdays.  Dang.  She is good like that.  I am not.  But I will never, ever forget Rose or the tremendous gift she was to us.  Thank you for saving us, Rose.  (I know you’re reading this.)

Back to stomas.  I’ll share a story with you that I have never talked about because I have so much shame around it.  And it’s a story that proves Ted’s goodness as a human.  I’ve mentioned my decades of dieting and not being in great relationship with my body or food.  It’s relevant. Ted gets diagnosed and we spend weeks trying to figure out what the fuck to do.  This was not simple.  My option was clear.  Do this surgery or the cancer kills you.  Not the case with Ted’s.  It was an excruciating decision and took many, many hours talking to experts from different institutions, with friends and family in medicine (Ted’s Uncle played a key role in helping us even know we had options. And I am forever grateful.) and talking for hours between the two of us.  Once we decided and got surgery scheduled friends offered to take the kids so we could go out to dinner. 

So, Ted and I are sitting at a restaurant talking, trying to enjoy this meal, even though we are mostly just stressed and worried. His surgery was not far out.  I’m having a really bad day with my body.  Not surprising cause it’s easier to focus on my body than on the incredible stress that is happening in my world.  So, I say to Ted, “I just want my body to be different”.  I SAID THIS.  OUT LOUD.  TO TED.  RIGHT BEFORE HE WAS GOING TO HAVE FIVE ORGANS REMOVED.  Take a second and imagine being that self-absorbed.  Wowza!  Ted replied to my stupid comment with, “I wish my body was staying the same”.   That’s all he said.  He didn’t call me a self-centered, selfish jerk who doesn’t consider other people.  And he justifiably could have.  And when he said, “I wish my body was staying the same” I completely got what an incredible idiot I was being.  So, I’ll give myself that small credit. 

But that moment, that has always stayed with me, and makes me wonder if I gave him the space to really grieve everything he lost in his body.   I don’t let others grieve well.  I’m the person who is like, “Well, your mom was 87, of course she died, what did you expect”. Nice, eh?  I know this about myself.  And I know it’s screwed up, so I do better but in my head, I’m still trying to figure out why we can’t just get on with it.  But with this loss of my rectum.  Wow.  Who knew I liked my rectum so much?  I really didn’t. I had no idea. I am POSTIVE that my attitude with Ted was, “Well, you get to live so get over it”.  And I’m sorry for that, Ted. I hope I wasn’t too much of an asshole like that, mostly I think I was too busy, but that could have made me more of an asshole. 

Having this stoma doesn’t yet feel like me.  It makes no sense that I have this.  Just none.  It makes no sense to me that the cancer reappeared. I was on a path, I knew who I was, I knew how my body worked, how my head and heart worked.  And I’ve spent a long time figuring that shit out. And now it feels a little foreign.  Time will heal this. I know that.  I will get to accept this new way of disposing waste and all that comes with it.  It will become normal.  It will be fine.  Just different.

When I came back from traveling in India a gazillion years ago, I worked with a really nice guy who became paraplegic at 17 years old in a swimming accident.  I asked him about making that transition, from being an athlete to being in a wheelchair.  He said, “I was just curious.  I thought well this will be an interesting way to live.”  Maybe I can be like him.

 It’s morning now. Happy St. Paddy’s Day. I slept last night.  I was up a few times, but I got myself back to sleep and I feel rested.  My surgeon just came in.  He was great.  He was so gentle and kind and apologetic.  He said it was unacceptable that I was in so much pain.  And he said it was unacceptable that the medicine I asked for last night (not pain related) and didn’t get was unacceptable.  He explained a lot of things.  And he told me my stoma nurse’s name which I immediately forgot!  Ugh.  

I already went for a walk this morning because my CNA was determined to weigh me at 6 AM.  Getting up is hard.  I was like, well, I’m walking now, because you made me get up and you have to walk with me.  She laughed.  I walked once yesterday, three times around the floor.  They want me to walk three times a day.  I get a little nausea when I walk. 

Thanks for listening friends.  And thanks for your comments.  They really support me.

More soon.

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