Postby NHMike » Mon Aug 13, 2018 10:15 am
Yesterday was an unusually good day. As I speculated earlier, I would have very good days and very bad days.
I felt the urge to go six times Sunday morning and made it to a bathroom within five to twenty minutes and things worked out fine. Sometimes I didn't make it in the evening but those things were small. I only used on diaper in the 24-hour period from Sunday morning to Monday morning though I did go through several pads. But I've usually used far more diapers per day. So control was decent for half a day. And I'm getting more efficient at the bathroom stuff.
This morning, I had to drive for an hour and I spent about 2 1/2 hours in the bathroom early in the morning before that and I grabbed the seat cushion from when I had radiation to make the drive more comfortable. Things worked out better than I expected them to. These bathroom things seem to last around four hours and maybe that's something to do with how the large intestine drains. It's not a fun time, especially if you have to be somewhere at some time.
The post-op meeting with the surgeon is tomorrow and it's one-hour in and one-hour back home so today is a dry run for tomorrow. I have quite a bit of issues at the moment and I don't know if it will just take time or if she will offer techniques such as PT to help. I will send her a note today asking about PT as it I would think that it would be in her department unless they are structured functionally. I have a PT person to contact at Mass General and she's supposed to be world-class but I don't know whether or not it's bad form for patients to see another doctor for something that your current doctor's organization also does. Mass General and Brigham and Women's are both part of Partner's Healthcare but they operate independently for most things.
I'm going to start a book (or long article) on reversal issues. Just something to keep track of what I find and what I will be learning along with some of the things that I'm going through. I sometimes gather a lot of good information and a paper or book is a good way to keep track of things.
6/17: ER rectal bleeding; Colonoscopy
7/17: 3B rectal. T3N1bM0. 5.2 4.5 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/17-9/17: Xeloda radiation
7/5: CEA 2.7; 8/16: 1.9; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8, 2/12 1.2
MSS, KRAS G12D
10/17: 2.7 2.2 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/17: LAR, Temp Ileostomy, Path Complete Response
CapeOx (8) 12/17-6/18
7/18: Reversal, Port Removal
2/19: Clean CT