Thursday, March 22, 2007

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,

Thursday, March 01, 2007

Shaking Hands With Disappointment

"I'd like to shake your hand, Disappointment. Looks like you win again." Excuse my theft of the Neil Young lyric, but there is no other way to describe the feeling today, when advised by Dr. Rifkin that the inevitable is upon us--a return to chemo. While we don't have the numbers from today, the trend is such that he is "worried". I suppose there is a chance that the numbers report on Monday could turn the other way and hold off treatment, but there was not much optimism about that being the case. The trend is upward with the IGGS, as well as the M protein, two critical measurements. Rifkin wasn't ready to talk in much detail about the options. We have an appointment in 3 weeks, to review options, data, and to plan the course ahead. The appointment is on March 22, a mere 2 days before the 2 year anniversary of the diagnosis. I will be doing my homework so I can make a recommendation to him. It will likely be velcade and some other drug, either a steroid or another chemo drug. God, he must hate me as a patient!

I'm having more difficulty handling the news than I would have expected. Despite the prostate surgery, and the recovery from that, this past 6 months has been a welcome return to some routine in our lives. I have been able to keep out thoughts of returning to treatment and generally enjoyed most of my days. Now that a return to treatment is likely, all the memories of being on chemo flood my mind. Stated simply, it's just no fun. Can the family handle more 'roid rage? And of course there is concern that treatments won't work and we'll face more difficult decisions. The mind loves the drama. I guess I'll have to get my mind back into shape to steele it from these flights into the valleys of pessimism.

But to give things a different perspective: A year ago I was bracing for yet another transplant, using the stem cells from one of my brothers. Through that lens, today seems OK. I told Suz today I need my two days to get over this news and get my head screwed on straight. I'll come around soon. In fact, as I write this to my silent bloggers, I start to feel better already. The connection this blog has given me to so many people around the world continues to lift my spirits. The wonders of cyberspace.

Next week Susan and I will be in Scottsdale, AZ. My friend, Joe Epstein, whom I'm mediating with, offered us his home ithere. All this was planned before we had today's news. We must be in sync with something. So that will be a nice respite before life turns more difficult. Joe has been a godsend. He has kept me as busy as I can be this month with mediations, which is a tremendous help with the dental bills, health insurance, etc. Plus it gets me out of the house and gives me something to do. I continue to be amazed at how our friends still take care of us.

We are experiencing first hand the country's health insurance crisis. Because my health insurance is keyed to my employment and there is always the risk of my not being able to work at all, losing my health insurance and having to go on Medicare, we've had to get Susan and Julia on a private policy (so she wouldn't be without insurance if I went on Medicare). Not surprisingly, at her age, she has a few health issues, which the new insurance company has used to increase the standard premium by 75%!!! But we had no choice. We are glad her insurance is no longer linked to my employment, although we pay dearly for it. I don't know what people do who don't have the means to handle these costs. No, I do know what they do--they don't have insurance.

We are doing OK. We will let you know what we learn at the 3/22 appointment. Stick with us. We will continue to enjoy life, despite today's news. We've dealt with worse and we still love our life and all those wonderful people who fill our lives with such joy.

Neil Young ends his lyric about meeting disappointment with this, "But this time might be the last." He goes on to say, "I'm savin' the best 'til last; let's leave this all in the past." Yes, maybe this disappointment might be the last. And if it's not? Well, we will continue with this journey. Love to all,