Moving Towards a Little More "Normal"

Hi There! I'm still here and everything is going well! The reason I haven't been updating you here as often lately is because I used to do most of the posting in the middle of the night on my artificial steroid energy, when I should have been sleeping.

By now I'm down from 16 mg of steroids per day to 4 mg per day, which is still keeping me plenty hyper, but not as bad as before. The steroids are to help bring down the swelling of the tumors, and most of the previous unusual symptoms are gone. The things I especially notice now is my inability to concentrate, difficulty with time and location orientation, balance, walking and climbing of steps and stairs (and Gerard can probably add to that list). I can walk for hours and kind of pull myself up the stairs, so it's not a big problem, but it's not normal. Also, right after I take a pill it affects my vision - it's harder to focus on things like the computer screen, and at any time I can't concentrate on long reading like long newspaper articles, a story or a book. Short bits of reading like e-mails, cards, parts of magazine articles, Scripture sections, and inspirational readings work fine. And of course I'm not allowed to drive. I walk and swim and Gerard drives me to places. Like today we went grocery shopping and later bought some new fish for my acquarium to surprise Ken when he comes home from the hospital (the acquarium is in his room, and he's in the hospital for a few days for some care).

So back to where I started, I'm now making myself get a normal night of sleep (11 - 6) and don't allow myself to get up during that time, up until yesterday with the help of a sleeping pill, but last night for the first time without. Which means that when other things are going on during the day, I'm not at the computer preparing blog posts. and that means that my life is becoming more "normal", which is a blessing in itself.

The other good thing is that I'm becoming more independent, which feels good. We have a situation of "escaping parents/patients" around here. A few weeks ago both Ken and I were chomping at the bit to get out of the house by ourselves, just to go anywhere alone. But because it was snowy and icy on the sidewalks, and Ken doesn't know his way around our neighbourhood, and I was losing my orientation, Gerard and Melanie, who felt responsible for us, and love us and were protecting us, didn't feel comfortable letting us go out on our own. Well, one day Ken went to the library on his own (with easy directions from someone) and when Gerard was volunteering at The Lighthouse foodbank one morning, I went to the library and Yonge Street on my own, taking my cell phone and promising Melanie I would call and keep her posted where I was. And Melanie just said, "Parents!!!!!! I feel responsible and what am I supposed to do?!!!"

This coming Monday, while Gerard volunteers at The Lighthouse food bank again, I'm planning to go to Well Spring, the cancer support centre at Sunnybrook, by myself on public transit for the first time, again with my cell phone. This time everyone knows I'm going and is encouraging me in this new step of independence. So there are little victories and blessings everyday, and I must say, I do feel very loved and supported when everyone cares so much, even though it means some loss of independence at times.

Alida took this picture two weeks ago.