Wednesday, December 17, 2008


We've decided to go to Arkansas so I can receive Dr. Barlogie's treatment protocol. We met with Dr. Rifkin on Monday and everything about that seemed to suggest that this is the way to go. We are waiting to receive my schedule from Arkansas and then we can finalize our plans. In the meantime, we've put our names in on a condo to rent. I'm thinking the start date is likely to be January 3rd. Julia will drive down with Susan and could stay for as long as a month, as she has some flexibility in her class schedule. We've already had many offers from friends to come down to Little Rock to help out for a long weekend and I'm thinking we're going to have to put together a schedule. On one level it seems to be quite a dramatic turn, and on another plane it all feels very natural.

I'll be much more diligent in my blogging and invite all of you to start posting comments so we can feel connected to all our friends.---just let us know what's going on in your lives. My recollection about my last transplant is that my blog is a large part of what kept me going----so let's do it again, and then again, just for grins!

I suspect there won't be a Christmas letter coming out this year, so you'll have to let this suffice. We wish you a very happy holiday season, and extend to you our deepest gratitude for everything you have done for us over these past few years. We are enriched and nourished by your support and friendship.

Sunday, December 14, 2008

Little Rock Bound?

We had our meeting on Friday with Dr. Barlogie. We went through the results of the multiple tests done during out last visit, the week before Thanksgiivng. No additional problem areas identified in the PET scan other than some gallstones. The bone marrow does not show heavy myeloma involvement (whatever that means). and the gene array has put me in the "low risk" category for the disease. My cancer levels are around 12% (compared to 68% when first diagnosed). I find the the labeling of this nastiness as "low risk" an oxymoron, but it refers to Barlogie's studies of treating people and how successful his treatment regime has been. Low risk brings a higher chance of remission. His recent studies show, when he is the initial treater, he gets 90% of his low risk patients into remission. 85% of those are in remission 4 years later. Becuase I have been previously treated I don't enjoy those same stats, but they are still good. So, what's the issue, you ask?

His treatment regime is rigorous, to say the least (brutal might be a more apt description). He proposes starting with 8 chemo drugs for a 3 week cycle, followed by further collection of my own stem cells, an auto transplant (my own cells), then a second auto transplant about 6 to 8 weeks later. This should take 3 to 4 months. Then 3 years of a 3 drug chemo regime as maintenance. He will require me to be in Little Rock for the 3 to 4 months of treatment, although suggested I might be able to go home a couple of times for a week or two.

We will see Rifkin, on Monday, to review the situation, although I am strongly leaning towards pursuing treatment with Barlogie. Of course, my greatest concern is my ability to handle this heavy chemo regime, but Susan will be by my side, keeping me going. We started looking at apartments this afternoon and will process that info over the weekend. If we decide to make the move, I expect we'll be moving to Little Rock in early January for a minimum of a 3 to 4 month stay. Many things to process, digest, and plan for in a short amount time---over the holidays, no less.

I struggle with how we will manage these months without the help of our many friends who have carried us through so many rough roads so far. But then we do have this blog, which Ted started before my last transplant in 2005, and we're already receiving offers of friends to come visit us, to help by giving Susan a break, and by just being there to support us. So, the journey continues. We love you all and continue to be full of gratitude for our many friends.

Monday, December 08, 2008


What does one do to prepare for an upcoming regime of chemo followed by a transplant? Why, go skiing, of course. Cate, Julia and I hit the slopes this weekend to test out the old boards. Julia has kept at it these past years, but Cate and I have been slackards (4 years for me, 7 for Cate). The day was reminiscent of many days of skiing 10 to 15 years ago when I had to help with the girls' boots, carry their skis, etc. etc. Except this time roles were reversed. The girls helped me with my boots as the cement in my back apparently has limited some of my flexibility. Imagine that! Julia and her friend Bob carried my skis and Julia was the great protector, lecturing me about going too fast, not skiing "in control", and on and on. It seems those words of advice I imparted those many years ago did find a place in their memories and they brought them out to lecture me, of all things. Even though it had been 7 years for Cate she hasn't lost a step. She was a beautiful skier in high school and she hasn't lost a bit of her smooth form. Julia has progressed nicely and has a similar smooth parallel style. And I still look like a bulldog, or bowling ball barrelling down the slope. Nothing has changed except I ski a bit slower these days. We had a great time and I am now ready for the trip to Little Rock to get the news on the latest tests and the proposal for moving forward. I suppose skiing could be the metaphor for this journey: sometimes the terrain is steep; it can be a little scary; you might even fall down and hurt yourself; but smoother runs are ahead so dig those edges in, hang on, and ride it through. I'm ready. I'll check in with you later.