Monday, September 29, 2008
Light the Night, Velcade Slipping
First, the good news. I have attached photos from the Walk. We had over 1oo people walking for Dan's Team and raised more than $30,000. I think Colorado will be close to its $1 million goal. Darin and Liz Schanker, who live next to the park, hosted a prewalk party that felt like most of the 100 people showed up. Then they made a most generous donation to Light the Night, after Darin and his partner, Kyle Bachus had already made a very generous donation from their law firm. Many of you were very generous and I have begun working through my thank yous. Oh, and don't forget Darin & Kyle had special T shirts made (the green ones in the walk), the Colorado Trial Lawyers made special shirts (the gray ones) and our neighbor had his own special shirt made---Yes Dan Can. Two former grade school buddies, Bob Agnew and Bill Ehli, surprised me by showing up at the party and the walk--they now live in Denver, but I had no idea they would be at the Walk. Such support we get!! I can't list everyone as it would be hundreds of you.
The next day Susan, my friend John Sadwith and I toured the lab of a Ph.D. researcher at Denver National Jewish Hospital, Yosef Rafaeli, who is doing Leukemia Society funded research on myeloma. Not only did we learn about his current research, but more about his funding woes. Not surprisingly the grant monies are getting more and more difficult to find. He showed us the various instruments they use (e.g., $250,000 microscopes, and $40,000 stem cell separators, etc. etc.) and let us observe the actual stem cells. He is trying to do some exciting things and offered to talk with me at any time about my treatment, and what other treatment might be available. Oh, how Dr. Rifkin is going to start dreading my visits. Not really. I'm sure he is very well versed in the drugs that are in clinical trials, although, because he has a medical practice, he may not be tuned into the lab work being done. Should prove interesting in light of what's going on in my blood.....read on.
Thank you everyone for your support, in spirit and in contributions. I continue to be humbled by the support we continue to receive from all of you. You keep us going. See above the a link to an interview I did with Denver's Channel 9 News that tells you how I feel about all of you. You're the best!!!
And now for the numbers news. Not so good. My Iggs have risen to 1984, (500 point rise in 2 months). My Myeloma Protein that roughly measures the degree of myeloma in the blood has risen from 1.1 to 1.7 over the last 2 months. It has been higher, but is has also been below 1. So, although I was not scheduled to see Rifkin today, I saw him in the hall, grabbed him and asked for 1 minute. He very graciously stepped over, told me he had seen the numbers, was not worried (he's only expressed worry a couple of times as far as I can remember (July/August 2005 and August/September 2007--when the Iggs were above 5000.) He said he has a variety of new treatments he is considering. His short term plan is to have me finish this cycle of velcade/steroids, maybe give me "some time off" (not further defined), and then do something completely new---also undefined. I won't have my next meeting with him until October 27 and won't get my numbers until November 3rd. Seems like a long wait--another opportunity to work on living in the moment and letting go of those worries for the future. Yeh, it can be hard at times. In the meantime, I will be shceduling that lunch with Dr. Rafaeli to find out what looks promising on the research and clinical trial fronts. It's nice to be connected--again thanks to friends, John Sadwith and Chuck Turner (the executive director of the Colorado Bar Assn, and whose son is working with Dr. Rafaeli.)
Briefly, a few moments to let you inside Suz and my heads today. These are hard days, although not unexpected. We shared a few watery eyes, but no tears. We're stronger than we've ever been, physically, emotionally, psychologically and spiritually. We have honed the tools for this next regime, whatever it might bring. We find ourselves bracing, working even harder to build just a little more strength, before I get hit with the heavier stuff (we both hit the gym and then drove to the ashram in Boulder for an evening meditation). Fear is circling but we've learned to keep it out most of the time. We spent more time together today and had not the slightest of disagreements---even about my driving! Even though we're bracing, we soften. Julia and Catherine are conveying strength and confidence, but their concern is evident. Of course, this is all based on past changes in my treatment which were more difficult for me to handle. Perhaps there is an effective nontoxic drug waiting to be used on me. So, we'll hold on to that thought.
I spoke in August to the membership of the Colorado Trial Lawyers Convention about living lives of consequence. When you realize it could all end rather soon, (as it can for all of us, but mostly we don't have to think about that) the look back at what you've been doing naturally is filtered through a different lens. I have tried to busy myself, when I had the energy, mostly with volunteer activities that matter to me, such as the Leukemia Society and the Trial Lawyers work for consumers (when you call in sick or drop the ball on a volunteer activity people usually don't get mad or threaten to fire you). I think I actually took too much on as I'm feeling more tired these days and with the new treatment coming on, will probably reduce those activities to some degree, but certainly not altogether--completing the Light the Night walk and the promo work for it should help. But more importantly, doing things I like for causes that are meaningful to me feels like a good way to spend my days. That will continue. We will continue.
Thank you for all your support. We love you all.