It looks like things may be working out for me after all, both in terms of doctors and treatments. After enduring the perfect storm of departing doctors, booming disease, and insurance headaches described in recent posts, there may indeed be calm in the eye of the hurricane. One might even say that change can be good, even though the circumstances leading to it have been just about as bad as I could imagine.
But I have learned not to count my chickens until they're in the house bawking, so the fewer details I go into now the better. In about another month, if all goes as I hope, I may have some good news to report here. In the meantime, I'll just shut up and deal with pressing matters at hand. Thank you all for your love and support and advice.
Part of the CLL journey is luck. . . . Luck in terms of the disease, luck in terms of its responsiveness to treatment, but also luck with being there at the right time when the right person or thing comes along. You may be less lucky in one area than another, but what counts is, somehow, that you muddle on through and also create opportunities for luck.
Even in the darkest hour, do not stop trying, and do not be afraid to shoot for "yes" when only "no" seems possible. When your life is at stake, there are no excuses for not going "all in" to find opportunities, even if it seems you don't have a lot to go "all in" with. You've got yourself, and you've got your loved ones, and that is everything. If you don't think you're worth the fight, or that they're worth the fight, then you have bigger problems than CLL.
I'm in my ninth year of dealing with chronic lymphocytic leukemia. I've changed my mind about some things over time, but two things seem as true to me today as when I started: One, deal with your emotional baggage going in, or start working at it then and don't stop until you have reached a clear place where you can get your game on and fight most effectively. Two, never panic. Do not let fear dictate rash action, no matter how pressing the need for action may seem.
I'm going to add a third bit of advice now: Don't be afraid to put your eggs in more than one basket (I must have chicken on the brain today). Cast around, Look everywhere. Opportunity comes to those who seek it, and my guess is that success will ultimately come to those who are willing to give up everything (including time and money) for it.
And please keep in mind that you do need a good doctor, or good doctors, to help make things happen. You can only go so far alone, and there is a big difference between feeling that you are carrying your doctor, or that your doctor is carrying you.