Bob Massie

Sorry it has been such a long gap since I last wrote. It is harder to post from home when there is so much to tend to. We had a delightful homecoming. We were met at the airport by Sam and John and who whisked us and all our luggage home, with help from Dana.

Katie came roaring back into the house just as we arrived, with Sonia who had taken her out shopping all day for new school clothes. She was thrilled with her haul and we were all sooo relieved and happy to be back together in our own home with each other and with our cats.

That had been Katie’s explicit desire all summer – to have a few days to be all together as a family. We had a brief and intense dose of that. Bob sat up late listening to the boys debating economics and ethics – music to his ears to be sure. He may even have offered a well aimed comment (or two).  Katie literally hummed through the house and modeled her clothes and hugged her cats, who happily responded by shedding all over the new duds.

The house was beautifully cleaned, thanks to Sarah’s efforts to find and supervise cleaners.  Marcy had brought over flowers and basic staples. Sonia arrived with armloads form Wilson farms, so we sat around munching on fruit and cookies. We were so well welcomed!

The next day we took the kids out for a celebratory brunch at Henrietta’s Kitchen. A real extravagance but watching the kids enthusiastically dig in to their fourth courses was worth it. They enjoyed pointing out delectables that the others might have missed.    At one point, when we thought no on could eat another thing, Kate grabbed her plate and said, with the spirit of a World War II ace, ” That’s it.  I am goin’ back in!”

The first week was slow and full of relief and gratitude just for being home.  By the weekend, at we were getting concerned that Bob’s energy was lagging. My sister and family came through for a quick visit on their way home from Maine. We had a supper of Chinese dumplings and kid fun, but Bob was beginning to look very sallow and retired early. Sunday afternoon we had a lovely surprise when David Michaelis stopped by – everyone was coming down from down east.  Sitting in the backyard sun Bob’s color was definitely off and we were starting to worry – always on a weekend! Another surprise visit (with pie!) from Nadine, but Bob was too tired to come down. – though he enjoyed the pie later.

Monday, Jude Weiss came to hang out with Katie while I took Bob into MGH for labs and his scheduled rendezvous with his longtime hepatologist – Dr. Ray Chung.  By the time we saw Ray, they had analyzed the labs from that morning and seen that that his liver numbers had jumped up.  This was worrisome, so they immediately admitted Bob to the transplant floor for more extensive testing.  They gave him albumen, which made him feel better, and decided to tap his belly to pull off the fluid (ascites).

Sad as he was to be back in a hospital, and after a moment’s nostalgia for the warm team approach they use at Emory – it all went very smoothly. Bob had a pleasant and quiet roommate the first night and no one the second night. The nurses were good, the floor quiet. They even turned down the hall lights after 10, which Bob really appreciated.

I needed to spend much of the next day getting Katie ready for the start of school on Wednesday. Sonia had dealt with the need for skinny jeans and tank tops, but Mom had to get the actual school supplies. Then we needed to spend the last day of vacation doing something – anything – fun.  Slightly constrained by the unwanted hospitalization, but aided by spectacular weather, we did have a lovely day – meandering down Charles Street, looking in the shops, having lunch and walking around the public garden. Then Jude stepped in again for a couple of hours of Newbury Street and I went to check on Bob.

After the initial intense disappointment of going back into the hospital, he rallied and was coping very well.  Visits from Jude and Charlie Lord, Bruce Walker and Owen Surman all helped.    By Wednesday afternoon they were clear about releasing him to come home.

The upshot – confirmed the next day in our clinic visit – is that the liver is holding up well, the body is not rejecting it and its functions are all on target.    The more difficult news is that the Hepatitis C, which we knew would be an issue post-transplant, has come back more quickly and aggressively than we had hoped it would.  Fortunately, it is not causing fibrosis.

So he will start Hep C treatment  immediately on Tuesday, rather than wait any longer. The treatment is pegylated interferon with ribiviran. It is not fun. Bob ran three courses of it before back in 2003-5, trying to stop or slow the virus with no appreciable success. And it makes you feel really crappy. Hopefully with a new strong and well functioning liver he will tolerate it better and it may even work much better.  They will start him off on a low dose and see how he does. And then there are always those new medications we keep waiting for down the line. Several are in stage three trials and should be ready in ano
ther year.

So that is the update – the up/down/up date.

One more adventure:
Friday night my parents were here – also on their return from Maine – and we had a wonderful dinner in the backyard, Mom and Dad, Bob, Katie, me and Jude eating Mom’s meatballs and fresh veggies from the market.  As we were all getting ready to turn in early, we heard commotion in the back street – people rushing down the alley from the houses behind us carrying pets and stuff. We looked outside and saw a blazing fire about the size of a large bush. As I reached for the phone I could hear the sirens. By the time I alerted Bob and we went to the window again the house on the street behind us was totally a wall of fire. The owners were out for dinner, no one was hurt and the fire was quickly contained, but the newly renovated house is a total loss. As Katie said, we met tons of neighbors we had never seen and the community has rallied around Kathy and Jean.

Thus our strange and eventful summer. We are determined to enjoy these days of summer!     Thank you again for all the different forms of support we have received from so many friends!