It is always easier for me to write these updates when I feel on a bit of an upswing. After a tough time, now over a cold, and with two units of blood yesterday, I am feeling better.
The real problem is that I just do not want to eat (my weight is about 134 lb without clothes). My stomach says eat, but my mouth refuses (see Cookie Monster on McNeil Lehrer, explaining in the Cookie Gate scandal that he always obeys orders from his stomach.)
Anyway, Joan and friends are scurrying around to get food and supplements recommended for me yesterday by my nutritionist. In addition, as of this morning I am on a new drug that hopefully will boost my red cell production and/or shrink my significantly enlarged spleen — both of which will considerably reducing stress on my system.
I have to make clear that if none of this works in the next couple of months, I will be seriously considering steps that would put me in hospice. The times of joy have been far too short, and the times of the opposite far too long. As always, the main problem is absolute exhaustion. Once I stop blood, I should slip quietly away in a few weeks.
Family, friends and medical staff have been amazingly supportive of my process and my ultimate decision. The mechanics are actually quite simple. Once I stop blood transfusions, I immediately become hospice eligible — because I will have less than 6 months to live. I might, at some point go into an appropriate room in the health center of our long term care facility, or I might stay in our home. Many of you have heard me say that often when people say, “I want to die at home”, what they are really saying is that they want to stay in control, and they think, often rightly, that home is the only way to do that. I am lucky to have absolute confidence that I and the family will stay in control to the end.
Thanks again to all who have been and continue to be, an incredible support.