To recap, I’m doing a 3 day infusion protocol every other week. Go in on Monday, get stuff pushed including 2 of the 3 elements of Folfox, then get hooked up to a pump that dribbles in the 3rd element over 46 hours. Go back in on Wednesday to get the pump removed and, to boost white blood cell recovery, a shot of Neulasta.
This week, add in 2 units of blood on Thursday to boost my saggy hemoglobin numbers.
Well, after the first round, on the Thursday I was kinda blah all day. This time, after the second round, and despite the hemoglobin boost, I was really blah. I’ll admit that some of my dietary choices contributed to this, and thus we’re making some notes – no Chinese food post-chemo, for instance, not even mild stuff. But I was just off last night, really really blah.
I was looking forward to maybe a good night’s sleep as I’d not really had much the night before. I went to bed at 9:30ish, took the morphine, and… yeah, got a few hours.
And then poop.
I’d been planning on changing the colostomy bag this morning as a regularly-scheduled event, but about 3ish in the am, the bag decided it was done and started leaking at the usual spot on the seal between it and my skin.
Well, up and to the bathroom and execute the bag change and back to bed and now I’m awake so I stay awake reading for a bit and it was a good thing I did because the new bag didn’t seal right (probably installation error on my part) and also started leaking and because I was awake I didn’t get any poop on the bed.
Back to the bathroom at 5am and change the bag again, except that the sealing paste hadn’t had time to set up, so I had to remove it with my wet-with-hot-water thumb, a little bit at a time. Tedious and somewhat irritating to the skin surrounding the stoma.
But I got it off, got the thing all cleaned up, put a new bead of caulk down, and much more carefully applied the 2nd bag of the morning.
And then I didn’t really sleep much more. I had what looks like the last surgical follow-up with the surgeon this morning, so I had to get up and get dressed and we had to drive the 30 miles to Kelsey-Seybold. And lo, the surgeon looked at the healing-nicely wound, put a little silver nitrate goo on it to encourage some skin growth, slapped a big ol’ band aid on it, and pronounced it good. He thinks the skin will be grown over it in another week or two.
Then we came home.
I should say here that when I got up this morning, I was feeling MUCH better, and that’s continued through the day. I’m sure part of this is related to the fact that I was able to emit poop (chemo can induce constipation) last night. Much of my discomfort was pressure in the GI tract. which pooping relieved.
And thus it was with a great deal of consternation that during once such poop event mid-afternoon, the contractions my belly/abdomen go through popped the seal on the bag I’d installed at 5am.
Back to the bathroom. Change for the THIRD time today. More scraping of sealing goo. Clean myself up. Apply more goo. Carefully apply the new bag…
…and before I could even get dressed again, my fucking body contracted and squeezed out a new nugget and popped the fucking seal on the new bag before the adhesives had a chance to even set up properly.
Well, it was just a wee little bit so I wiped it up and re-pressed that part of the bag seal back into place and held it for a while so the adhesive would have a chance to set and thought I might’ve gotten away with it within the window of viable adhesiveness.
And I did get away with it. For maybe an hour and a half. Then it popped again and I was back in the bathroom for the FOURTH bag change of the day.
Keep in mind here that the manufacturer says these things are good for 5-7 days. The colostomy patient forums, however, dismiss that as marketing BS and say basically “yeah, just figure on changing every 3 days”.
This time, I kept pressure on the adhesive ring for a longer period of time and also through a few contractions.
It’s been about 2 hours and several contractions and this one seems to be holding. FOR NOW. I’m applying pressure when the contractions happen. [ADDENDUM: popped it at 2hrs, 20 minutes standing up to get off the toilet. I am enraged.] [ADDENDUM 2: Yep. Had to replace it just over 4 hours in. Trying messier but previously-reliable “enough goo to squeeze some out when pressing bag seal down” method.] [ADDENDUM 3: Well, that didn’t work due to… something. Probably something to do with different brand of goo which is less viscous and sags off me before I can get the bag applied. Applied YET ANOTHER BAG with the goo on the bag’s adhesive ring itself and we’re looking at almost 10 hours now and it’s holding. Except now that I’m talking about it, it probably won’t much longer. I’ve also called my supplier and had them ship me a fresh box o’ bags on Monday before my regular monthly shipment leaves on Friday. Of course, had to pay cash – well, plastic cash – for this because my insurance is a little persnickety about when it will allow a shipment to go out – we were supposed to do it this past Friday the 9th, but the insurance said not before the 16th. Anyway, there’s a fighting chance I’ll not run out of supplies.]
Keep in mind that unlike our sphincter, which we have some degree of conscious control over, I have no control over when the section of my descending colon that feeds into my stoma will act. It’s part of the autonomous nervous system and thus figuratively has a mind of its own.
I’m going to try to sleep tonight, but I’m wondering how my poop paranoia will work to prevent that.
Dad drives his rental car home tomorrow into the southern edge of a winter storm. He’s cautious and will be sticking to the big roads and should be leaving early enough that he’ll miss a lot of it. He’ll be flying back next weekend because apparently he just can’t stay away.
The peripheral neuropathy seems to have backed off, though you won’t catch me reaching into the freezer without gloves as that’s an experiment I don’t want to try right now.
So… for the weekend? Hoping for quiet. Maybe take a drive for the first time since December 19th. Laundry. You know, exciting stuff.