to every side of me; their howls were loud
while, wheeling weights, they used their chests to push.
They struck against each other; at that point,
each turned around and, wheeling back those weights,
cried out: Why do you hoard? Why do you squander?' "
We live and die by protocols. Long pages of stuff that determine what is next. Dates of treatment, types of treatment, rules about when there will be treatment. It is pretty amazing how difficult and complicated it can be for all involved. More then once I got us prepared for a hospital stay and then the "counts" were not right. Or we just went in for a blood draw and ended up staying for a week or two.
Oh Cancer parents are greedy and we hoard and squander like the best of them. We pursue health and any small moment of laughter. But most of all we want to be normal. We want to look at a calendar and know that what we think is going to happen will happen.
We mostly want certainty and we live in the most uncertain of all worlds. The world where nothing looks right. Sort of what I imagine an LSD trip would be. Everything is the same but just off..... We are tired of not knowing what is going to happen or in some cases not happen.
A hard part of level four is the isolation. Most is self imposed but some comes from people being afraid to ask you what is going on.... No one wants to ask the question and find out how bad things have become.
My sister called and asked what was going on and I realized we have been doing nothing. Mary-E is processing and in a dark hole. She sees no reason to get out of bed right now. It takes her a while to figure out things but there is an appointment next week about her GVH and she is worried. She has failed to taper 3 times and really really wants off the prednison. She knows it eats your joints and causes other mega problems. So she withdraws, I try to tempt her with short forays into life. It will be fine. It is just a bit of a rough patch.
For the record, I never took LSD and the day the guy that invented it gave it to the medical students at GW. My dad was in the hospital recovering from appendicitis.