Were do they all go?

I was discussing some mutual CLL friends with the spouse of a (sadly) deceased CLLer. We both agreed that we had lost touch with a number of outgoing, well-regarded CLL patients. Where do they go? Have they died? Have they just moved on, and stopped posting on the various CLL lists?

I could, but won't, name names. I do know that on many occasions, we get the sad news from a spouse, son or daughter, that their loved one has passed away from this crappy disease. I remember one case that bothered me a lot. The daughter of a proud, older farmer who had developed CLL had written in asking for advice. I gave links to websites, put in my two cents on various subjects, and tried to help anyway I could. Unfortunately, her father passed away from CLL after only a couple of years.

But what about people who just disappear? I know in one case a woman who went through HDMP+R (high dose steroids plus rituxan), and followed it with Campath, had such a good response she just stopped posting. She let her website lapse. I feared the worst. But, she finally answered my e-mail. She said she was just putting CLL behind her. (What a wonderful outcome for her!)

Others just disappear without a trace, and I'm reluctant to e-mail them or search the obituaries. No news is good news, sort of thing. I suspect that most of the friends I've had with CLL (some of whom I've met in person) have passed away.

Really, I wish they'd have a loved one let us know what has happened. I know it might be difficult to let the rest of the world in on your grief. I've left instructions to my wife to write to various lists if and when I pass away. (It doesn't have to be from CLL, now does it? Car crashes kill over 40,000 people a year in the US.

One CLL memorial page is at: http://www.cllfoundation.org/Memorial.aspx. At least this page lets us know what happened to some of our CLL friends.