Bob Massie

Well, this is one of those situations in which the perfect could easily become the enemy of the good.   As I sign in again for the first time since the transplant, there is so much I want to say about the amazing team and experience at Emory Hospital, the huge gifts that have been dropped on me by thousands of people and by life itself.   But that is going to take a long time to process and to describe, and I am still a very tired man.

BUT … I am a tired man who is OUT OF THE HOSPITAL!.    Hallelujah!   I was discharged this afternoon.   There are still a few tubes hanging out of me, my body is still in a kind of shock as many of its functions learn new roles, but I am up, walking with only the slightest assistance, and measurably stronger with each new morning.

I am now, as they say, resting comfortably at the Mason House (a kind of B&B for transplant patients and their families).    When I returned from the hospital I sat on the veranda for an hour.    Now I have retired to my intensely quiet and cool bedroom.   For the next few days and weeks, I will be dispersing my venues and forms of rest from the porch to the bedroom to the living room to meals in the dining room with friends and strolls outside, interspersed with frequent visits to the clinic for blood draws and check-ins with the doctors and transplant team.   I am long way from healed and there are many wobbly numbers that must continue their downward stabilizing trends.   The complexity of what is being monitored is mind-bogging.

But so is the reality.   The reality that I have someone else’s organ inside bringing me back to health.  The reality that this organ has been making Factor VIII at normal level for a week, so that it seems that my hemophilia has indeed … dare I say  it? … been cured.

So much to say …. to share with you, this will come out it in time.   Anne has been a tower of strength, an ocean of calm and compassion.   She just went out to swim.   Our dear friend Alison Hughes, who normally lives in Madrid, is here for a day or so.    Tonight I might have a slice of pizza for dinner – part of the indescribable joy of my new life.

Bless all of you and thank 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.

Bob is in the process of getting a new liver! More than 6 years of waiting and 10 false starts, he is in the operating room with a wonderful group of doctors and nurses. He went in between 1:30 and 2 am.  The surgery will take at least four hours and then several more for him to get to the ICU for recovery. I am back at the guest house to get some rest with my sister and brother in law. They will call me when they have put the liver in and when they have finished the surgery. I went down to pre-op with him and we shared the headphones to listen to Tom H and the St James's church  singing ninasadiki. We even sang along as we waited alone for a bit in the pre-op room in the very middle of the night. It has been an amazing experience and the love and support we have felt from all of you has been incredible. Thank you all.

10 pm Still waiting – my sister Lolly and her husband Martin are visiting from Athens and we are just trying to keep it light. A fair amount of silliness is filling the room. The nurse just told us the surgery is scheduled for 11:30. I'll post the news when they really take him in to the OR. Then there will be no news until the morning. I may even try to get some sleep. Love to all.

More patience. The chief surgeon, Dr. Knechtle just stopped in to let us know that the surgery start time has been pushed back until "at least" 10 pm. There are a lot of pieces to an event like that, many of them having nothing to do with us. The delay has to do with the generous fact that more than one organ is being donated, and is not about the already complex liver sequence.  So we wait more. Thank you all for waiting with us. All we can say is – we will keep you informed and no one should actually hold their breath.  We are doing fine and planning to hole up with James Bond for the afternoon.

More bulletins as events warrant.