Next week Brinley will go back to the hospital for her second round of chemo in maintenance. She'll have blood work done, and go for vincristine which is usually a 10 mins IV drip. She also will be on those lovely little steroids once again, but only for a week. The last time she was on DEX the mood swings hit her pretty hard around the 2nd day, the eating however didn't kick in until the week after, when she was off of the steroids. So according to my calender, her mood swings should be tapering off the first few days we're in Disney world but then the eating will be full effect while we're there....lots of eating...in happiest place on earth.
I really hope this next dose won't put her out of commission for the week we're there. She usually bounces back pretty good, I don't want this to be the time she doesn't.
I'm really trying to get back into the swing of things and back to frequent blogging. For a while I just felt like a broken record, relaying how I was feeling, how treatment was effecting Brinley and everyone around her. In part I just wanted it all to stop and go away. I found as maintenance got closer, the more angry I became. I know it sounds backwards, I should have been happy we're going into maintenance right? And I was....but I was also on the tail end of hospital visits every week for nearly 7 months. I started to resent it, I hated walking the same hall ways, seeing the same faces (even though they are the nicest kindest faces ever) I was angry about every part of taking Brinley to the hospital, and not at her, never at her...but angry at our reality. Quiet days at home had changed to mornings rushing off to the hospital, IVAD pokes, chemo, lumbar punctures, and waiting. Waiting to get to this place that is maintenance. Waiting for peace, a sigh of relief, and the energy to refocus our life a little bit. But we're here, and as much as I'd like to say "it was all worth it" I don't know if I feel that way right now, or if I ever will....guess time will tell.
I stole this from my friend Lisa, I hope she doesn't mind, but it's very fitting.
Susan Sontag in her work Illness as Metaphor said this:
Illness is the night-side of life, a more onerous citizenship. Everyone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick. Although we all prefer to use only the good passport, sooner or later each of us is obliged, at lease for a spell, to identify ourselves as citizens of that other place.