Thursday, June 24, 2010

I am completely and totally blessed. Yes, there have been hard times and harder times but by the grace of God I am alive today. I have two wonderful boys who certainly can make life challenging yet interesting at the same time. I have a husband who is able, on his own, to provide for our family since I have lost my employment. I have wonderful family, close and extended, who have truly been a Godsend to me these last seven years. I have the absolute best friends in the world who can easily and quickly change my mood and make me laugh. Always. The cancer road is tough, I'll admit that, but the lessons I have learned so far have been precious and turned me into who I am today. God willing I'll have many more years to learn many more lessons and to set a positive example for my boys. These last four years have for some reason been tougher emotionally and physically than the first three. But that's okay. I'm still learning, and honestly wouldn't trade the last seven years for anything.

Wednesday, June 23, 2010

Summer Time Blues

I have found the summer time quite difficult these last few years, especially the weekends. I feel unmotivated and lazy and useless so this ache in my gut presents the perfect excuse for lying around and watching TV all day. I am the epitome of a procrastinator putting off all possible chores and errands until 'tomorrow'. I hate this in me. Something has happened in my life recently that I haven't mentioned and I believe this is hugely contributing to my depression this summer. I have lost my job. Found out the first of May. I am still trying to come to terms with this. The job I so loved and was so proud of (for to hold a job for over four years with a cancer and chronic disease diagnosis I think is pretty outstanding) will not be waiting for me this fall as in previous years. I loved my job as a pre school teacher assistant. It was perfect. Part time, home by lunch and off when the kids are out of school. I couldn't ask for better. The money wasn't much, but this accomplishment to me wasn't about money. It was about doing something I loved with people I loved. But my all too often absences finally put the school into a postion where they felt they couldn't keep me on. I have been asked to substitute which I am considering, but the day to day being a 'part' of a classroom is gone. It hurts, is a heartbreaker really and is just one other area of my life in which cancer has taken over. Oh I won't give up, won't give up the fight, but I do feel the wind has been knocked out of my sail for a bit.

I do plan to keep up with this blog. I do not feel it has fallen into the pattern I want it to yet, but feel I will eventually get it there. Thank you so for taking time, which is very precious, to read my postings.

Friday, June 11, 2010

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.