August 17 – Bob’s birthday

Last night I returned to Georgia after 48 hours in Somerville. I delivered Katie to home where she had not been since two days after school ended It was great to see the place although quite overwhelming to be faced again with all the pieces of life we had, in some cases literally, dropped on the floor in our haste to depart.  I met with the contractors working on the house, arranged to get a crew in to clean the house thoroughly before we return again with Bob and made various relatively fruitless efforts to get a grip on the next transition. Although I did not feel very successful in the end, I was glad to be there, to get it all started and to get Katie back home.  Our stalwart support Marcy came straight to our house from her long drive home from Michigan and graciously agreed to move directly into our house without even a night at home, which allowed Katie to stay settled in her own room.  With Sarah’s help we found some energetic house cleaners, with Brad’s help I was prepared to negotiate some better work from our contractors, Ed arrived and cut the lawn, John picked us up at the airport, Tom and Jane fed us, and Sam took Katie to the movies.  One again we are carried along by the support of many many folks.

And at the top of the list was the great help from Ken who came down from Nashville to stay with Bob while I was gone.  He took Bob to clinic on Friday, then helped him navigate to and from a procedure, and supported him though the unfortunately painful aftermath. Over the weekend, they also went out to dinner, had long talks and even ventured out to church on Sunday. The rest of the time, Bob slept.  I arrived back around midnight and Ken left this morning.

This morning we got up and slowly set out for the clinic visit. Already calls were coming in from family and friends to wish Bob a happy birthday. But the day did not unfold as a fun celebration. Shortly after we arrived we found out that another procedure was scheduled and we could count on being there all day. I ran back to the guest house to collect reading and a movie to get us through the inevitable waiting around. Jean, Bob’s liver donor stopped by with some very cute birthday cards. Dr, Knechtle came in to see how Bob was feeling.

They could not do the procedure – a needle biopsy of the liver, until certain blood work came back. When it did, the test results were not useable, so the test was done again. When the new results finally came back, the doctor came in and explained the procedure and prepped Bob. They got started and two minutes later the nurse called me back inside the room to speak with the doctor. Because Bob still has a great deal of ascites, fluid build up in his abdomen, Dr Ram, decided it was more advisable to do a trans-jugular biopsy rather than go through the abdomen. So the day of waiting was all for naught. Now the biopsy is put of until Wednesday. Tired, frustrated and a bit down, we went to Steak and Shake for a bite. (Bob had not eaten all day). Back at the house, Bob conked out, waking up occasionally to field calls from family.  At dinner time, we sat out on the little porch in front of our door and ate salad and melon as a storm approached. The air was soft and almost cool. As the sky darkened slightly, a rainbow appeared through the trees straight in front of us. We could see the rain approaching and it finally fell gently just in front of us, our shallow little portico just barely keeping us dry.  Just as we went back inside, our friends Jon and Karin came over with a small cake, Allan and Gretchen arrived next with sparkling wine and we had a small and pleasant party crowded into our little living space, Bob sacked out comfortably on the couch and the rest of us on chairs and the floor.  The group did a quite impressive rendition of happy birthday and we ate the delicious cake and talked for about an hour or so.

So a day of typical contrasts, waiting and frustration, then compensation and good company.

We are planning to have more of a birthday at another date, maybe when we can also catch up on Sam’s birthday, which took place while he was in China.

Tomorrow, the 18th is a sad memorial service for our classmate and friend Stephen Mantell. Stephen and I were in high school together, then both left PDS early to go to Princeton and both turned 17 fall of our freshman year on the same day.  So many people do not make it through the medical morasses that beset us. his courage and spirit inspired many.  He will be greatly missed.

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