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!

We have been cleared for take off. We will fly home tomorrow to continue Bob’s recovery in our own home. Hooray!

For anyone interested, here are the clips from news stories on the domino transplant, with footage of Bob and Jean from a news conference the hospital arranged earlier today.

Fox 5 (evening telecast)
http://www.myfoxatlanta.com/dpp/news/Patients_to_Talk_About_Rare_Procedure_082109

NBC 11-Alive
http://www.11alive.com/rss/rss_story.aspx?storyid=134205

CBS 46
http://www.cbsatlanta.com/video/20497446/index.html

Emory Health Sciences Web (Main):
Please note our own video and photos will post next week.

http://whsc.emory.edu/home/news/releases/2009/08/georgias-first-domino-liver-transplant.html

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.

It has been a week since I wrote and I feel I am slipping as a correspondent.  This morning at 10:30, Bob is still sleeping which is good.  We had a lovely evening out last night for the first time –and only two weeks from surgery! We felt confident going out because we had dinner with our doctor, Stuart Knechtle at his home.  It was a long and lovely evening full of lots of talk of family and medicine and all our trials and hopes. He and his wife Mary Banks are wonderful new friends.  We all agreed that the whole experience had an aligning of the stars quality. In an email exchange with Gwen Feder this morning, she told me that our first discussion of contacting our Princeton class took place on July 9 2008. The transplant happened one year later, July 10, 2009.

In addition, we are very much looking forward to having our daughter Katie with us next week.  She is getting tired of the Maine family scene and misses her parents, as we miss her.  We are making plans to go to the Atlanta Aquarium together, I will take her to the zoo and she wants us to all go out to lots of movies together.  Her brother John has been checking in with her regularly and that has been great.

The days are quiet here, with some moving around the guest house, a little email catching up and a visit from Jon or Allan or Nancy. Jon and his wife Karin have twice brought us delicious dinners and Jon has come by to talk ethics and economics with Bob in the afternoon.  I get in a swim or some errands.  Bob is clearly recovering, able to sit longer and walk more each day. He does “laps” around the guest house first floor and walks me down the path as I go to swim.  He marvels that the bouts of cloudiness are gone now. He alternates between being up and around and sleeping, which seems just right.

But a few days ago was typical of another kind of day for me. We had a clinic visit all morning. Then I went to fill a prescription for pain medicine at one of the local CVS stores. The ‘scrip was written in a dose the pharmacy did not carry and since it is narcotic pain medicine one needs an exactly correct written ‘scrip to get it filled.  This meant calling the clinic pharmacy nurse and having him track down the doctor and making a trip back to the clinic, all before people left for the day. Bob was at the very end of his supply of this critical med so it could not wait until another day. I accomplished all this and left the clinic with the valuable piece of paper and zipped to the closest CVS where they confirmed they had the medication. But…there was a problem with the insurance. The pharmacist called me over to say the insurance company would not authorize the medication until… the next day. I was so relieved he did not say next week!  I also knew this was a 24 hour pharmacy from having had to make a similar ridiculous medication run a few days earlier. So, I asked, when exactly does tomorrow start?  Home again, and then back to the pharmacy to be there just after midnight to finally get the needed medication so that Bob could sleep through the night. That was my pharmacy day.

Today I hope we can take a small jaunt to see an exhibit in the art museum next to the hospital, where they have a collection of photographs of the initial discovery of King Tut’s tomb.  We are avid fans of the Amelia Peabody mysteries by Elizabeth Peters including a fictionalized account of the discovery of the tomb.  It will be fun to see the actual photos of that event.

Even while we are rejoicing in the return of energy and returning to real life we are reminded that it might not have turned out this way. Sadly our dear friend, Michael Ryan, succumbed to his own liver disease last weekend while still waiting for a transplant. Michael found us through this page and shared many issues and interests with Bob, symptoms of liver disease, the trials of waiting, interest in theology, and discernment about what to do with the gifts of this life.  Michael, while tired and quite sick, was applying to divinity school when he fell and broke his hip, went into the hospital and began a steep decline.  Our thoughts are with his wife Debora.

Lots of love to all of you

It was a week ago that they took Bob into surgery and gave him a new liver. It has been two days since I posted last and it hard to know where the time goes.  Hospital life takes up a lot of time even when nothing dramatic is happening. Each day Bob is a little better, stronger, more mobile. Each day brings it’s own hiccups, struggles and questions. And its milestones – eating, getting out of bed, walking laps around the ward and various other important but unmentionable improvements. Bob is working really hard to push through each challenge.  He is such a pro at looking after himself and keeps his eye on each new target.

The have given Bob a pic line because after 40 years of his own injections his veins are so tired he just did not want to be stuck every time they wanted to check a blood level. He has had Xrays and ultrasounds, all done at the bedside by marvelous techs. This evening he had an MRI which will be read by a doctor Stuart described as the leading expert at interpreting liver images.  They are keeping a close eye on his liver functions, which yesterday were a bit high but today are getting to where they want them to be, and his white cell count which is still a little high. They have an approach to bring up the medication levels slowly, seeing what he needs and how he does. The current hope is that Bob will be ready to leave the hospital early next week.

While this is the biggest event in Bob’s complicated medical adventures it has been the smoothest hospital experience. We are so impressed with the doctors and staff here. Bob being Bob, he gets into conversations with everyone about their background and life experiences.  They come from all over the world and they have all been very good to us.

I have spent the last two nights in the hospital and that helps Bob sleep. I have slept Ok here as well on a fold-out chair made up as a bed. We moved Bob into the adjacent room which is bigger, brighter and had lights that worked better.  He can also see out the window from the bed, a rare detail in a hospital room.   In the evenings we are deep into watching the miniseries John Adams which we missed the first time around and now have on Netficks.

Today I got in another short swim, and though I was pretty tired, it felt great and the sun was hot and relaxed my bones. The day before yesterday I had a longer slow swim. I went up and down the lanes with my head laid sideways in the water like on a pillow, doing a slow sidestroke. I started trying to think about all the people who had helped us get to this point but there are too many to keep straight. I have promised myself to try to write it out later on.  It’s not a chore but an amazing blessing to review how much support and love we have been given.

We have also received a great many wonderful messages and even a pile of cards which are lined up on the bulletin board. The address of the guest house is Mason House 1555 Shoup Court, Decatur GA. 30033.  Thanks for reading.

Anne

End of a 14 hour day at the hospital and I am tired. Relaxing now at the guest house in the lovely living room – doing email and catching up – sipping Makers Mark and nibbling chocolates thanks to the tender care of my sister in law Susanna.  Bob’s metabolism is still a little freaked out – hot then cold, occasional sweats, etc but he seems to be evening out and gaining strength.

We had some surprising visits today, Stuart Knechtle brought the hospital COO to say hello and ask Bob how he was doing. We had glowing reports for him on his staff and the great care they provide. Even more surprising was when the knock on the door revealed Richard Besser acting director of the Center for Disease Control. Not because he was concerned that Bob represented any pandemic risk but Bob was a good friend of his sister Karen and my mother knows his parents and let them know about the surgery. Every day more amazing connections emerge and welcome and care for us here. My great friend Alison is going to come by on her way from Madrid to NJ – (slight detour).  Allan Sandlin and Jon Gunnamen continue to help us out almost daily and Nancy Newman is checking in regularly too.

When I have a minute to get out of the hospital I find myself in the midst of a beautiful college campus – (as if a hospital were built on the site of Murray Dodge for you Princeton folks). The beautiful undergraduate library is across the way and the main college green with the art museum is adjacent. Some good cafes are at the other end of the green.  It is all green and gorgeous too.  There is even a stone bench in memory of one Sam Tate to make me feel at home. 

John is having a great time at the Duke Marine lab and Sam has relocated to Kunming China and calls when he can. Katie is at the lake in Maine with my folks and, as of this evening, her great friend and cousin Milena. We miss her a great deal, though she does make it clear that she is glad to be in Maine and not hanging around the hospital.  

6 Pentecost Proper 10 Year B 7-12-09

©Holly Lyman Antolini

Lections: Amos 7:7-15; Song of Pilgrimage; Ephesians 1:3-14; Mark 6:14-29

Blessed are you, the God and Father of our Lord Jesus Christ, who has blessed us in Christ with every spiritual blessing in the heavenly places, just as you chose us in Christ before the foundation of the world to be holy and blameless before you in love. AMEN.

Like the great sweep of arches, tower, stone and light that defines the capaciousness of this great worship space around us here at St. James’s, the opening benediction of the Letter to the Ephesians creates a capacious vision of hope for the community committed to following Christ.  All in one great rolling, run-on Greek sentence in the original, the Ephesians author sets out the full scope of God’s blessing upon us.  God’s blessing, Ephesians tells us, runs to every corner of the universe, and spans the entire length of history, from “the foundation of the world” on into the future, to the very “fullness of time” itself, when at last “the mystery of God’s will” will be fulfilled, as “all things are gathered up in Christ, things in heaven and things on earth.”  In this spacious vision, all the diversity of God’s creation will be re-unified in Christ, restored to each other, belonging with and to each other once again, not in uniformity but without division and competition and animosity and violence and fear.  God, affirms Ephesians’ author, “accomplishes all things according to his counsel and will,” and our inheritance as Christ’s brothers and sisters, who have “set our hope on Christ,” is to live in the steadfast hope of this great reconciliation.  We, in our baptisms, have been marked with the seal of the promised Holy Spirit in a cross upon our foreheads, as the pledge of that inheritance, that inhabiting of redemption even now, while we still wait for the final consummation of all things that this passage promises.

This particular Sunday, we at St. James’s are experiencing more than the mere mark of promise upon our foreheads as a testimony of the Holy Spirit.  We have ju
st witnessed a most concrete enactment of that promise, a kind of advance return on investment, right here, right now.  For some seven years now, this congregation has been praying our fellow congregation member the Rev. Bob Massie through a long, long and at times acutely difficult waiting, not just waiting for the reconciliation of all things, as we all are, but waiting on the organ donor list.  Bob was born a hemophiliac whose “blood factory” did not produce the Factor VIII we all need in order for our blood to clot properly and prevent us from hemorrhaging every time we bruise or cut ourselves.

As if to compensate for this terrible life-long “thorn in the flesh,” Bob also seems to have been born with a concomitant double helping of determination blended with organizational genius.  Perhaps enduring many episodes of bleeding and pain and protracted – you might even say, recalcitrant – healing as a youth and throughout his 50+ years of life tuned Bob’s inner ear and soul to the needs of the vulnerable. Despite his physical difficulties, he has dedicated himself to prophetic ministry, speaking truth to power and calling leaders to account not only in the battle against apartheid in South Africa but also for environmental and economic injustices right here in the U.S. of A.  He seems to have heard God’s voice much as Amos the pruner of sycamores heard it back in the 8^th Century B.C.E., compelling him to be a PLUMB LINE OF JUSTICE, and to point out the “leaning walls” of self-serving policies and their destructive implications wherever he saw them, even when to do so made those responsible intensely uncomfortable.

In that sense, Bob has also shared the lineage and calling of John the Baptist, who, in today’s story in Mark’s Gospel, lands himself in prison for speaking forthrightly to the Roman puppet Herod about his inappropriate relationship with his husband’s wife.  The setting of the story among royal courtiers and its grisly outcome could tempt us to think ourselves far removed from Herod’s “dysfunctional family par excellence.”  We do not send our young daughters to dance for drunken parties!  We would not serve up anyone’s head on a platter!  But let us not miss the quotidian ordinariness of Herod’s type of sin.  How many times in our lives have we known perfectly well what was the “right thing to do” but let the opportunity simply slide by us, fearing that to speak up would risk our appearing weak or impotent, or worse, would expose us to retribution? How many times have shut down the criticizer in order to avoid hearing the criticism?  How many times have we sacrificed the long-term good for a short-term “easy way out?”  Herod, as Mark depicts him in this story, KNEW his own wrongdoing.  How else would he have so quickly perceived that Jesus’ works of power could be John, risen from the dead?  We may not be minor despots wreaking murder; our failures of nerve may be mostly verbal or worse, silent, but most of us are all too familiar with Herod’s face-saving violence.  Not Bob Massie.  Whatever his faults may be, remaining silent in the face of injustice has not been one of them.

As Bob has pursued this remarkable prophetic dedication to the work of justice, his body has seemed almost determined to block his progress.  One of those obstructions took the form of hepatitis, and began to destroy his liver, so that seven years ago, he became eligible to receive a new one.  Several times he was called to the hospital to prepare for surgery as a liver was identified for him.  Once he was even on the operating table.  But then the liver was determined not to be the right genetic “fit,” or in the right condition, to go forward.  And he and his wife Anne and his kids, Katie, John and Sam, returned, once again, to the long discipline of waiting, wondering, consulting, evaluating, exploring options as new techniques for dealing with his liver problems emerged, and through it all, fearing, praying and hoping.  And we too, along with them, have been waiting, wondering, praying and hoping too.   And marveling as, again and again, liver or virtually no liver, he took up his prophetic plumb line and called us to stand with him against injustice.

Last week, Bob and Anne suddenly got a call from the transplant center in Atlanta GA that there was a new possibility on the horizon, and that they should come immediately and make themselves ready.  A young woman had moved much higher than Bob on the organ donor list, and was eligible – indeed, desperately in need of – the next appropriate liver donation.  Her own liver, though perfectly normal in all other respects, refused to make a certain enzyme necessary to health and, in an extremely rare condition, the rest of her body was also failing to make the enzyme.  Bob’s body, on the other hand, manufactures this enzyme without incident outside his liver.  The doctors in Atlanta realized that if the young woman received a new liver from the donor list, her own liver, so healthy in all other respects, could do all the work Bob needed it to do even without the enzyme-producing function.  More extraordinary than that, the young woman’s liver produced Factor VIII.  So if, in what is called “a domino transplant,” Bob could receive her liver as she received her new one, he would, for the first time in his life, be hemophilia-free.

The day before yesterday, in a three-and-a-half-hour surgery (half the time it takes to do a liver transplant normally), and with the loss of only a few ounces of blood so that he didn’t even need a transfusion, Bob Massie received his new liver, as did his young liver-donor in the neighboring operating theatre.  As of yesterday morning, both patients, their bodies adjusting to the receipt of their new organs, were recovering extremely well.  Anne reports that their four white-coated surgeons – Bob identified them as his “strange angels” – were practically dancing down the hallways at the extraordinary combination of skill and grace that has brought about this double healing.

As a final fillip of grace in this extraordinary episode, who should be attending the Massies as their “chaplain on the ground” in Georgia, but my colleague from my days as a vicar in Maine, the Rev. Allan Sandlin, formerly rector of St. Francis-by-the-Sea in Blue Hill Maine and pastor there to Bob Massie’s mother Suzanne.  Though Allan had left Blue Hill and spent almost the last decade as rector of the Episcopal Church in Frankfurt Germany, he had recently taken a cure in Decatur, GA, right near Atlanta. But even more remarkable
, Allan himself had a liver transplant a few years back, after waiting more than a decade for the right liver at the right time.  When the time came for Bob’s surgery, there was Allan, right nearby, shepherding, praying and anointing Bob and Anne through this extraordinary, transformative time, knowing more intimately than anyone else could know all the hopes and fears involved.

What a powerful testimony of grace this is for ALL of us who have been praying for Bob all these years.  What a long journey of sustained hope has brought us here!  There is still lots to pray for; the assimilation of a new organ into the body after transplant, as you no doubt have heard, is a delicate process, fraught with dangers as the natural processes of the body try to reject the foreign organ, no matter how good the match.  Our journey of hope is by no means over.  It will be weeks before we can be sure that Bob is moving “out of the woods,” and he will need careful attention and care for the rest of his life.  But now he has a long “rest of his life” to live, a life, most extraordinarily and miraculously of all, free of hemophilia, and life in which to devote his full energy – and enlist OURS, too! – to the prophetic work God has given him to do.

Ched Myers quotes Markus Barth describing the Letter to the Ephesians as offering “theology as doxology:” the study of God as the work of praise.

Myers writes, “Human history has long mocked the hope for the genuine reconciliation of everything.  Yet the fact that it is a mystery revealed [in Jesus Christ] invites and challenges us to be part of this new ‘administration’ entrusted to Messiah… to live in solidarity with God’s will as ‘citizens’ of this [new] social order [of hope and reconciliation] [Proclamation 6 Series B Pentecost 1, Fortress 1996].

The miracle of Bob Massie’s new liver and new identity as a man free of hemophilia is yet another invitation to all of us to live our lives “radically determined not by the uncertainties & anxieties of the world around us, but by our experience of God’s goodness to us… [to] frame our conduct therefore not by the competitive and anxious mores of the world but by the love & peace that God’s goodness has made possible for us.” [L. William Countryman, New Proclamation Year B 2003]  AMEN.

The Rev. Holly Lyman Antolini St. James’ Episcopal Church, Cambridge Episcopal Diocese of Massachusetts
“The idea that some lives matter less is the root of all that is wrong with the world.”  Paul Farmer

I know many people are looking for updates and I'll try to post once a day if I can get in the rhythm. 

Yesterday I actually wrote a post full of the highs of the day, then promptly lost it on the computer. Bob, even as weak as he was, cautioned me to write it off line first, so this time I’ll be more careful.

It has all gone incredibly well. I remember that years ago at RISD the students made up a term: “moonbooters” for people who needed gravity boots to keep their feet on the ground. That was how I felt.

I will save my grateful thanks for another day because it would take me days to write.

Last night we were marveling at how well it was all going when he suddenly had a gastric bleeding and a flurry of activity ensued making sure that his factor levels were high enough.  They are rising appropriately on their own but it takes a while to reach the full level – and his gut was probably irritated by the tube they stuck down there. The totally lovely hemophilia doctor came into the hospital at midnight Saturday night to make sure Bob was getting everything he needed.  So in the end he had a farewell, last-dance infusion at 1 am. Just to be sure we were not too cocky about his perfect progress.

After everything was settled back down, Susanna (who had arrived not long before) took me back to the guest house where she made the bed and gave me a backrub. I only remember the first two minutes of it as I conked out instantly, and slept through until morning. A great, restful and needed sleep!

Today is post op day 2, he is doing well. I came in for morning rounds and heard the good report from the doctors. They pulled the gastric tube, stopped the IV, the morphine pump and the Factor VIII. Then we resettled him without the noises of the pump, the visitors and everything. He was sooo tired and he slept and I went back to the house. There I found that Susanna had totally cleaned up my room, done my laundry and generally made beautiful order out of everything.   When Susanna and I came back to the hospital, we found Bob sitting up in a chair, having his lunch! Practically surreal!  Then he got cleaned up and gave himself a shave and sat in a chair for two hours. Back in bed, he is resting consistently, calmer having to work less hard to make progress. I expect he will have a peaceful week, though now much of the trial is to get through the unglamorous part of the recovery: exhaustion, cramps, hot flashes, sweats, and the rest of the normal unpleasant results of surgery. The hospital staff are wonderful.

Bob is dozing while Susanna, Allan and I are talking. Hillary the PA, came in to tell us that Bob’s Factor VIII level at 4 pm was good, after stopping the factor at 9 am.  He is beginning to successfully make his own!   We were all beaming at the thought.

More tomorrow.

Anne

UPDATE as I was writing this message: He is out of the OR and doing fine! Halleluiah

Bob is still in surgery. I am back at the hospital after about four hours of sleep but more rest than that implies. Maybe it is the lack of sleep but I am beginning to feel like I am floating. Lolly and Martin went in search of coffee and I was talking with Ettie on the phone in the hall where I could get reception. A nurse went by and paused, hearing my conversation she introduced herself as one of the transplant coordinators. Then she gave me a huge enveloping hug and assured me it was all going to come out wonderfully. I am just beginning to believe that and I have started to cry a lot.  I took his "shot bag" back to the house, thinking he is done with that! We are so bouyed by all of your love and support.  The recipient donor at the center of the domino is out of surgery and doing well she told me. Amazing. amazing. amazing.