November 7, 2020 More

Hi again.

I shouldn’t write now, let alone post, because it’s nighttime. Yet here I am …

My health isn’t the only challenge I’m facing right now. I have another one. Enough said.

For anyone going through a colostomy or about to – whether now or in the future – here’s some more info – it may apply to you: My stoma goes up and down in size. I was told it would stop shrinking about 6-8 weeks out. Well, it’s now been 4 1/2 months and it has just shrunk considerably (still sticks out much, much too far – ugly, ugly, disgusting). This means that my appliance no longer fits correctly. My skin is no longer covered properly around the stoma. This is BAD. You don’t want your “output” on your tender skin. Unfortunately, the new chemo drug Irinotecan- even 2 1/2 weeks out – has turned my “output” into mud so it no longer falls down in the bag. It stays put right around the stoma. I can’t get it out of the bag so the bag just gets heavier and heavier and noisier and noisier until I am forced to toss it. But I only get a certain number of bags a month so I can’t toss it daily as I’d like. Nope. It hangs on me – right on my belly – day after day. Yup. And it stinks.

No one will tell you any of this. No one told me.

P.S. I used to be cute. Now, my hair is thinning and dull; I have circles under my eyes; and I’m a walking poop machine. But I am alive!

Onto another topic: death.

I could die of anything. Anything. However, it is most likely that I will die of cancer – even if I go into remission, even if I outlive the 5 year, 14% survival rate. I don’t plan on having an obituary but I know how it would likely read if I did.

Strange. Unsettling.

I remember when my grandmother moved out of state when my grandfather retired. She said, “I’m going there to die.” She knew she’d never be back. She was right.

Sometimes I wonder if I will die where I live now. Is this the last place I will ever live?

See – I told you I shouldn’t post at night – thank you for indulging me …

I’m listening to an album entitled Theta which is instrumental/new-agey type music that you’d find in a California spa. It’s very soothing – puts Sweet Pea right to sleep.

Sweet dreams,

Love, Molly

5 thoughts on “November 7, 2020 More

  1. It sounds like what you’re having is called pancaking. There are a variety of ways to help with that. Talk to your doctor first, but I used Miralax to thin out my output so it would fall to the bottom of the bag. I learned how to play with dosing myself every day depending on how thick my output was. I thought my stoma was disgusting too, until I remembered it was proof I was still here. For me, it couldn’t be disgusting because it saved my life. Just something to think about.

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    1. Good to know it’s called pancaking – helps to identify issues. Yes, I know my stoma is saving my life and I’m glad I have it and that it works. I don’t know how to say this – before surgery, the doctor talked to me about my body, the way I like to dress, where the waistline on my pants hits my torso, etc. – and then he gave me this stoma. If it protrudes to the extent it does for a medical reason or if it is typical of stomas, I would not complain. It was all done on an emergency basis and I was so sick that I didn’t even think to research stomas and ask the right questions – I didn’t know there were different sizes/shapes. So – even though it sounds like it – it’s not my stoma with which I am upset – it’s just sitting there doing its job. In the hospital, I asked if the colostomy could ever be reversed and I was told that there could be complications. Forget it – I’d never risk it, ever.

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      1. I didn’t even get those questions. The plan hadn’t been for an ostomy at all. But my tumor was so big and in a bad place that a colostomy was the only option. Unfortunately for me, the placement was terrible and we had a devil of a time figuring out the right mix of products. Those first two months were a nightmare with constant leaks, sometimes multiple times a day. But maybe it wasn’t possible because of your tumor or something else to put the stoma where you wanted it?

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      2. Oh my god. That’s terrible. A colostomy for me was the only option too – they were afraid my colon was going to rupture because the tumor had almost completely blocked it. But the stoma has worked perfectly – the most important thing.

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  2. By the time I was able to have surgery, my colon was blocked in two separate places and about the size of a softball! But we eventually got things figured out and I purposefully went from a well managed colostomy to potentially more difficult ileostomy. I have Lynch Syndrome & have a high risk of other cancers, including a new colon cancer in the next ten years. So I opted to remove the rest of my colon & go with a permanent ileostomy. It has its challenges for sure, but I wouldn’t change it.

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