A fine line between denial and hope

We had a short but wonderful weekend in New York City. Took care of the requisite visits to friends and family, and managed to sneak in some romance. Sat in the front row for The Producers and saw an old college acquaintance star in Avenue Q. It was good to get away.

Tomorrow I go to Boston. In the last month -- and keep in mind this was a short month -- I will have been in Ft. Myers, Atlanta, Austin, New York and Boston. It occurs to me lately that I may not have such a flurry of travel again for a long time. When I have seen friends and business contacts in these places (most of which I've visited for work), I say "Well, I probably won't be seeing you for awhile, hahahaha," and then I realize to myself, "Damn, I really won't see you for QUITE awhile" -- and in the case of the business associates, "I may never see you again." I'm quite fond of some of them, so this is an oh-my-god revelation.

Never. See you. Again.

This is a concept I'm trying to get my arms around with SS, as his mortality bears down on us. We took him dinner on Friday night, and I tried to keep it together. I wasn't sure if the best course was to try to stay upbeat, or to tell him how sad I am that he is sick again. However, he did most of the talking.

It seems there are some positive things, on the face of it. 1) He is (so far) responding to the experimental drug, and 2) his sister is a previously unidentified bone marrow match. When he told us these things, I got excited. This is the best news we could have hoped for, right? I told him he really should update his website, because this all sounds good. And I know his loved ones want to keep the hope alive.

He got kind of mad then. I get the sense he thinks this so-called hope is just a tool of denial for the rest of the people in his life. As he pointed out, 1) while it's great that the experimental drug is working, it also totally supresses his immune system which leaves him susceptible to dying from the slightest infection. And that is no way to really live. 2) A bone marrow transplant would truly be the last resort. And while a match might save him... if his body rejects it, he could die immediately.

So even the good signs are bad signs, the way he sees it -- prolonging the agony. I resist this negativity, but I cannot deny him his right to be angry. Angry at this sickness, for one. And angry at us, too. He feels his friends, his family, his wife are doing him a disservice by "refusing to accept reality." He will buy his own cemetary plot this week, and begin to plan his burial, because P., his wife, won't/can't do it. He has been filling out life insurance collection forms, leaving only "date of death" for her to fill in. He says he doesn't want to hear everyone mourning him before he's dead. I think he thinks it's a selfish need for us to want to tell him how much we love him before he's gone. I hadn't thought of it that way.

I really don't believe I'm in denial about losing him anymore, and I appreciate his openness and his honesty. But I can't pretend I'm okay with it, and I'll be damned if I will give up the hope.