September 14th, 2009:
16 days before I move into Maitri. That's become my new goal and everything is being swept aside to clear the way for that change. What all this means is that my tumor is now so incapacitating that I have trouble getting from one room to the next in my apartment. My friend Wendy was a houseguest this weekend, and she has a background in nursing and end-of-life care. She watched me navigating up and down my stairs and at the end of her visit she sat me down and said, "I think you are in serious danger of taking a fall. You're a cancer patient and your bones have been weakened more than you know. You are taking a lot of drugs, and your gait is very, very unsteady. If you have a serious fall and break a limb, or worse yet, your pelvis, you could end up in an Intensive Care Unit and be too broken to even be admitted to Maitri. I hope that doesn't happen, but I have seen it happen in cancer patients. Take care of yourself better. Don't go out and take risks. You have to care for yourself structurally."
That warning really frightened me. But more alarming was the actual feeling of being in my body right now. I cannot walk with any ease. I am very unsteady. So I have decided to just empty my calendar of all commitments outside this apartment. I'll schedule visits from people while I still live here and of course, I happily look forward to seeing people when I get to Maitri.
This afternoon, I received a call from the radiation oncologist who I talked with last week and who had rushed me into appointments for treatment. This time, he was much softer and a better listener. I told him about my concerns around not wanting to take on serious risk of being hurt by the radiation. He agreed that there would be skin damage and loose bowels for at least a couple of weeks. I also asked about radiating only the portion of the tumor that had grown into my leg. This time he agreed to consider that procedure although he was concerned that the lymphatic system that cleanses my leg would not be able to do it's job since the portion of the tumor not radiated would continue to press on those channels. After his call, I was talking with Eileen and realized that I didn't want to even consider radiation until I am settled at Maitri. When I'm getting 24 hour care, I can entertain the notion of having skin burn care and attention to loose bowels. Doing all that at home while waiting to move would be a nightmare. Major nightmare. So, for the next few weeks, radiation is off the table. I just can't juggle too much. Never was good at that.
It's shocking and sudden for me to live out this rapid decline in my ability to walk. But it's happening, and so for the next while, I plan to stay in bed as much as possible and read, read, read. After all these months of being sick, I am finally taking to a horizontal position. It's the most comfortable and the most appropriate. Wish me well, please!