Friday, August 22, 2014

Monday, July 28, 2014

I awake extra early this morning, at four o,clock, and can't wait to go for a bike ride.  I don't want to go too early, so I start doing my morning routine to pass the time. As soon as it starts to get light, I head out.  Yesterday I made it around the Boulevard one and a half times, and I want to do this again.
I make it.

I don't have finger tingles today, so I decide I should plan ahead and do those things I can't do after chemo, like wash floors.  It seems like such an insignificant thing, and it is not something I am fanatical about, but when you want to do it, and have the time to do it and can not, it makes you feel very helpless.  I guess this would be the time to get a mop, but nothing beats washing the floor on your hands and knees for getting every spot.  And mops, although they don't take up too much space, they do take up some, and honestly, I still haven't figured out where in my house my vacuum cleaner is supposed to go.  I'm hoping some heavy rubber gloves might help solve this problem, but I keep forgetting to buy them.

We make m&m cookies with Ghirardelli chips and deliver them to friends around our neighborhood. The chips are an extra special bonus today, I found a bag in the cupboard when I was searching for more M's.  We need two bags but only had one. 

My dad, who has no kidneys and has dialysis three times a week needs to have his port flushed today.  Sara picks him up from dialysis and brings him to Miriam Hospital, comes back to daycare, picks him up, brings him to dialysis, picks him up again and takes him home. She does this often, without complaint. Who is the superhero here?

Today I experience diarrhea with an ostomy bag.  I had asked my visiting nurse about how to deal with this when I started chemo, since they list this as one of the possible side effects.  I had dealt with small amounts before, but this was more than I anticipated.  And very awkward.  Imagine standing, talking to someone, while this bag that is protruding from your abdomen fills up with this most vile liquid.  As your bag grows so big, between the poop and the gas, you are afraid it might burst before you get it open.  Meanwhile, you are worrying about how you smell.  I can smell the poop, can everyone else? 

Yesterday I started teaching one of my first daycare babies how to drive.  Her mom was nervous about teaching her, and I have experience after teaching my three children to drive, so I volunteered.  It is the opportunity to spend time with an important person I love, but seldom find ways to spend time with. 

She did excellent, even being in a small car with a person wearing a very fragrant poop bag.

Tuesday, July 29th

When we went to the playground this morning, the fountain was working!  This was very exciting, since we had given up hope that it would be turned on at all this summer.  We love to play around the fountain, even when it is not on, but having it splash out water while we throw in wishing pennies is one of our favorite activities.  If the water is high enough, and it is hot enough, we even get to stick out feet in the fountain.  This makes a summer day in the playground even more perfect.

The lemonade man also came today, nice and early.  It was very warm out, and being more than a week out from chemo, even I could enjoy a cup. My fingers still got tingly, but a tissue wrapped around the cup solved that problem. We were a happy bunch when we left the playground.

At knitting this evening, I got a preview of the afghan my knitting friends have been working on for me.  Dana is making beautiful flowers to put on it, roses and lotus blossoms.   It is going to be beautiful.

I am very gassy at knitting, but my friends just laugh with me. 

Wednesday, July 30th

I am tired of smelling like poop.  Was it the kale I had with dinner last night, or maybe the onions? Is it from the food I ate over the weekend? Is it just my body dealing with the chemo I had last week? How many things do I have to try eating again to see if they are the cause of this foul scent? By the time I get this all figured out, hopefully I won't ever have to think about it again.


  1. It is so interesting to read about life with the bag--I admire your ability to share your experience. Your writing demystifies things and makes an ostomy seem less scary/yucky, even though you are describing diarrhea and smells. I guess it's because you are a lovely person, telling it like it is. But I think my favorite part of this post might be: "honestly, I still haven't figured out where in my house my vacuum cleaner is supposed to go."

  2. Since I am a bit older than you I willl share something. For a while, I have experienced involuntary gas. It is very embarrasing. One time I was in the store with a friend and it happened. I moved quickly away from her and then I thought, "Maybe someone thinks she did it!" I told her about it and we both had a good laugh. However, in your case, you would think that someone would have invented a bag that neutralizes the smell from it.

    1. Thanks for sharing! Funny how we react to our bodily functions, isn't it? There are deodorizers and I was using one. this was just a particularly bad few days for some reason, and then it stopped. No one I know has complained about the smell, I think it is partially me having to get used to smelling different. At the beginning it was difficult to shower as regularly as I am used to, and that didn't help either.

  3. Hey, there are bag deodorizers. An ostomy nurse can help, if you don't have one you should be able to get an order for some teaching and help.

    1. spectral_ev, I love your helpful comments. Did you drop by some fellini's a few weeks ago? I had the ostomy nurse training, otherwise this would all be unbearable. That week was just not great, having the runs in an ostomy bag, well, honestly it was not worse than having to run to the bathroom constantly, but the emptying of the bag contents, not a pleasant experience. No one tells me I stink, it is just how I think I smell. It is one of those things that I worry about. I can't even mask things with a perfume, as Radioactiveman is really sensitive to perfume. This will pass, I will get better at bagging it, and then, hopefully at that point, I will be done.