Making Our Way Through Winter

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We always seem to start these messages with an apology. I guess it is a good sign that life is too full to keep up. But in case the silence worries anyone, let me say right off, that we are still holding steady. Bob has to endure one or more deep patches of exhaustion every day (he says it’s like being covered with a truckload of wet sand) but he has also learned to manage the rhythms better. He is in good spirits and staying productive in many different ways.

We had one bad incident in November right after Thanksgiving when Bob tried to come down to the kitchen one morning when he was feeling a bit groggy. He lost his balance, fell down the stairs, and landed on his back. The EMTs were a bit surprised when they came rushing through the door and found Bob sprawled on the landing with a needle in his arm, infusing a time-sensitive dose of clotting factor. At the hospital they discovered that he had cracked one of his vertebrae, but nothing more serious. Over the last two months that has healed well.

At our most recent visit to Dr, Chung in early December we found that Bob was pretty much in the same place as before. We continue to anticipate that his MELD score will rise, indicating further decline in his liver function, and when that happens we will move forward with a transplant. While we wait, the medicine he would take post-transplant continues to progress. Vertex 950 is in stage II trials and still appears to be very promising. In the meanwhile, Bob has been getting acupuncture and that may be helping his energy level a little.

We continue to have conversations with people who are familiar with the transplantation process. When Bob asked one experienced physician to describe what happens afterwards, he said “When it goes well, it is like the raising of Lazarus.” So that certainly offers us hope.

We had a wonderful Christmas season full of family. Sam was home from Yale and is obviously having a great time there. My parents came up for a few days - the first time they have had Christmas away from home. It was great to have them here. Bob’s mom Suzanne and Seymour were here and on Christmas eve we also had our upstairs neighbors, Abra and Chris, and as always our dear friend Betsy, making an even dozen. After a lovely dinner prepared by many hands, we lit the tree and sang carols. The late service at St James’s ended with 16 teenagers, including Sam and John, doing a spectacular rendition in four-part harmony of the Bell Carol - put together just before the service!

Lately life seems to be full of music – Katie is making progress on the violin and is starting to learn some fiddle tunes. Bob plays his guitar or banjo with her. She is also singing in the St James’s choir and in the North Cambridge Family Opera production of Antiphony – scheduled for the first two weekends in April - all are invited. John keeps drumming, improvising on the piano and now is learning to play the guitar. He will drum with the St James’s Men’s Chorus next Sunday.

My own work has been very demanding and interesting this year. City-State had an exhilarating Board of Advisors meeting last fall followed by a beautiful reception at President Mandle’s house. This spring we are producing an exhibit of student projects for the 195 corridor in Providence – a truly collaborative project involving RISD, Brown, Roger Williams and the Providence Preservation Society. In addition, I’m helping plan the Congress of New Urbanism XIV, for Providence in June.

Both Bob and I have continued to stay connected to politics at a wide variety of levels. We were delighted when our friends Denise Provost and Pat Jehlen were recently elected in special elections for the Massachusetts House and Senate. We are extremely excited about Deval Patrick's campaign for governor, and we have had the pleasure of holding a house party for him, offering policy advice, and getting to know him as a friend. Finally, Bob recently co-authored an op-ed piece in the Boston Herald with John Kerry, which we will post.

Some days Bob feels like he is in a peculiar kind of exile and has to survive on raw patience. Other times he is very aware of -- even grateful for -- this rare opportunity to read and reflect. He is definitely cultivating the long view; the stacks of books around our bedroom, on topics from early American history to the philosophy of accountancy, continue to grow. He alternates between being stuck in glue and being filled with excitement, enthusiasm and creative new ideas. We are all hanging in there -- and we are grateful for your support.