[Darice]

Very good point Chirley, and one we all--caregivers and patients alike--need to keep in mind.

We have always been open and honest in talking about all of this. I'm certain everyone on this board knows how very sobering it is to realize that you MUST get your affairs in order and talk about things that you had expected to be well off in the future, but are now the realities of today.

Jens has always been a fighter, a warrior. It's just his nature. Through much of the battle, he hasn't really wanted to know his prognosis or how bad things are or might become. He recognizes that statistics are just a bunch of numbers, and he has certainly proven them wrong over and over again. His future is not tied to the expectations of the numbers. He has said to me that he is afraid he will stop fighting, or at least not fight as hard, if he fully acknowledges and accepts how bad things are according to the statistics. He doesn't want to know everything. He believes in tomorrow, and he is making plans for next year. He wants to make another trip to Germany, and he would like to invite his sister to come over here for Christmas this year. And this is while he has a tough time standing up beside the bed with the railing to hold on to. I will not crush those hopes and dreams. I will stand beside him as long as he wants to fight on, and hold him in my arms when he is ready to quit. And we do still have quality of life. Not what we had last year, or five years ago, or thirteen years ago before all of this started. But we still have our love and our appreciation for all things beautiful in life. We will still climb into that narrow hospital bed together and snuggle and hold hands as we listen to the music.

I have to be careful not to influence him too much. He relies on what I tell him, and I try very hard to be honest in everything without coloring it. In the end, it is all his decision, and I will honor and support any decision he makes. He knows that. We have talked about it. We have talked about the UTUC and what the next step there would have been without the acceleration of the tMDS. About what might be going on there now, and how it might impact his future. His uro (we have been with him 8-10 years now and trust him implicitly) had a bad accident about a year and a half ago and hasn't yet been able to get back to doing surgeries. This affects our decision. Jens well remembers the discussion with our heme-onc: that there are no more treatment options for the tMDS, nothing more he can do for Jens, and that it is time for hospice. He well remembers the discussions with the hospice folks . . . the end is near and this is what I want and expect. Signing all the paperwork supporting that. He knows everything that I know about the progression of the disease. And the expectations. And yet, despite all of this, he is still here fighting on after four months in hospice. He's just not ready to give up.

I guess my real job is to see that he goes out the way he would want: fighting. Neither one of us wants him to be defeated and depressed at the end, so I have to be careful that I don't let him wear himself out over little things or things that won't make a difference in the end. We don't want this damned tMDS to wear him down, bit by bit, but to take him honorably. Fighting with his sword in hand. That way he will have beaten cancer.

When we first got set up with hospice, one of the things they brought was a set of bright red towels. With the platelets at <3 and doing nothing to support them, the expectation would be that the end would involve a lot of blood and that the red towels would make it less startling and upsetting. Interesting.