Hold the Treatment, Let's Consult the Nation's Experts

We had the much dreaded meeting with Dr. Rifkin this afternoon. I had blood drawn on Tuesday so we could have the most current "numbers" to discuss. I had with me a color graph of my IGG's since this nonsense began (compliments of my daughter Catherine), research from the many recent clinical trials (thanks to Ted), and 3 pages of questions. The IGG's are up to 1786, a jump of 136. Hematocrit is down a bit, but I'm not anemic. Everything else is OK. We reviewed the many treatment options, discussed my questions, and arrived at the following decision: Rifkin wants to present my case as part of a presentation he is giving in Houston on March 29th. He specifically intends to discuss it with the nation's myeloma experts as part of their prep the night before the seminar. (He liked Catherine's chart, thought it was "helpful" and, who knows, may use it). His goal? To arrive at a treatment option that (1) could be used long term, (2) is not toxic, and (3) controls the myeloma. Who could disagree with that? As a consequence he is not going to start me on any treatment right now. He is unconcerned about going another month without treatment, even though the numbers are drifting up.

Just as I have the greatest family and the most fantastic friends, I have the best doctor. Susan and I love this guy. We will have the nation's experts consulting on my case! So, my friends, I have a respite. We continue to live month to month and that's OK. It brings the focus to the day to day and keeps the mind from running too far ahead of our lives. Amazingly that can be the source of great joy. Any moment you choose to live in is most probably joyous. So we will stay there for now, and if we are strong enough, we will stay there forever.

Love to all,
Dan