No one ever told me this disease would be easy to live with and it's a darn good thing too because life has been far from easy with this horrid diagnosis. But that doesn't mean it hasn't been fulfilling. Getting used to the ostomy again again has been a real challange. I realize now that I have had Oscar (my cute little nickname for the pouch) for a year and a half now, 6 months longer than I had the first pouch back in 2003-2004. And the appliance is every bit as difficult to deal with as it was back then. I'm going to guess that it never really gets easy. Oh many people with the same have told me 'you need to get used to it, accept it as part of your body and things will be fine'. Oh yeah? Well I am sure these people are quite well meaning but the fact is I accepted the appliance years ago, realizing that it and the wisdom of my wonderful medical team were probably the only reasons I've been around for the last seven years to complain about it! The getting used to it? Perhaps that is still to come. I can't sleep well, am always uncomfortable. And really it is a petty and selfish complaint with all things considered. I am here to enjoy my children and to try to set example for them which is what I aim to do. Both boys have a 50% chance of inheriting my faulty gene, which of course is dominant, so if they do get my gene, they get my disease as well. The good thing about knowing this is that we can have them monitored beginning at puberty. The bad thing is that we may find out they have the disease. I dread this knowledge. Dread knowing that the surgery and chemo that are now behind me might well be in their future. I take comfort in knowing that medicine and procedures and techniques are always changing and growing and maybe, just maybe by the time my boys are old enough for the surgery things might be a bit easier for them. I've always heard a parent's goal is to make things just a bit easier for their children than it was themselves. I agree with this, just wasn't thinking along the lines of cancer when I first heard it.

I am going to Charleston tomorrow, to the medical university just for a check up and possibly a change in medication for one med in particular that's giving me a hard time. By now, I can make this drive (3 hrs.) in my sleep, but I don't dare! The boys are going with me and we hope to spend time with my sister and her family for a little vacation. We need it.