Sunday, June 27, 2010

Update from the road

Some things:

1.) I think I have an appliance that works with my stoma! Any wear time longer than 24 hours is good for me, man. The samples given to me by the awesome wound care nurse rock except the pouches are drainable (which for you noobs means there's a clip at the bottom). I'm not a big fan of the drainable pouches because they are longer than my one use pouches and peek out from under the longest of my shirts. That is so not cool. New pouches can easily be ordered after we get to our new place.

2.) Swimming! I went swimming for the first time since becoming an ostomate. It was uneventful, thank goodness. I don't know what I was worried about. My normal swimming suit covers my ostomy well, so I don't even think you can see it. I'm glad swimming is so easy because I think I'll be doing a lot of it.

3.) My ass wound might be tricky with the swimming. I feel like I need to change it after getting out of the pool, and if my Head Ass Packer (aka Eric) isn't around, that won't happen. We'll figure something out.

That's really about it. New blog that is NOT cancer focused will be here:

I'll continue the cancer related updates here. And ostomy stuff too. The plan for you forward thinkers is to find a family doc, get a referral to an oncologist, and get a CT scan and colonoscopy in the fall. Good times, good times. I'm thinking this blog might get slow, but check me out on the new one!


  1. THANK YOU THANK YOU for doing this blog! I have read most of it and will probably go back and reread it more closely in the future. You are way more helpful than any of the 7 drs I have seen. I am also a mom that was just dx with stage 3 rectal cancer 6wks ago. As you know, a total shock to say the least since at the age of 37 (and you being 32 and a vegan!). I had to wean my 9mth old baby. :-( Are you an LLL Leader? It seemed like from a post you might be or attend mtgs. I am a LLL Leader for the past 14 yrs. I also have been told I will have a permanent colostomy. I hate the thought of that, but I have tried to put that out of my mind while I am dealing with 4 mths of folfox chemo and then 6wks of radiation and 24/7 pump chemo. Then I will have surgery after all of that. Here is my blog
    though no where helpful like your blog. Just me crying and complaining. I wish you the BEST. I hope I can get to where you are someday. You are such a strong and amzing woman!

  2. Mama, I am so so sorry about your diagnosis. So so sorry. I'm also an LLL leader too. :)

    Please, if you get the chance, check out The messageboards are full of information. Especially get familier with the side effects of radiation for women. Your docs probably won't tell you that stuff, I have no idea why.

    It sounds like your regimen is a little different from mine...that might be due to the type of tumor/cancer you have. Generally the deal is 28-30 radiation sessions with a 24/7 chemo pump. There is also a pill, but I'm pretty terrible with remembering that kind of thing, so I did the pump. It wasn't terrible. Then surgery, then more chemo.

    I can tell you that the colostomy isn't too bad at all. Once you find an appliance that works for you, it's pretty easy. I certainly don't miss all the time I used to spend in the bathroom. There are some ostomy boards too, when you get to that point. Believe me, I understand being overwhelmed and scared and everything.

    If you ever want to email, feel free. I'm also on colonclub (turtlemama77). Big big hugs, mama. It's a tough road, but you can travel it. Us moms are stronger than we realize. hang in there!