Bob Massie

A number of people have called or written me recently out of concern that my silence has been the sign of difficulties that might have arisen.   I am pleased to report that the opposite has been true; I have not written because I have continued to improve and I have actually started to get busy!

The medical news has generally been very encouraging.  On January 10, I celebrated the six month anniversary of my transplant.  I had the chance to catch up on the phone with Jean Handler, my liver donor, who has had her share of struggles but seems, like me, to be improving at a steady  pace.  The anniversary and the conversation gave me the opportunity to look back and realize how far we have come.

My various liver levels – AST, ALT, and the bilirubin that was making me look somewhat yellow – have all come down to close to normal range, which suggests that my body is now accepting the new liver.   The enzyme that had prompted the doctors to perform the vein-widening angioplasty in my liver a few months ago has also slowly been sinking to more acceptable levels, suggesting that the dilation did its job.

As the result of these improvements, my doctors at Mass General have gradually lowered or eliminated some of the medications I have been on.  I am taking lower doses of the anti-rejection drugs, for example, and we have dropped a few medications from my daily regimen completely.

The best news is that the doses of interferon and the anti-viral ribavirin that I have been taking since October seem to be having a significant positive effect on my hepatitis viral load.  This was a surprise, since the previous three times I had tried this therapy I became very ill and the treatment had no effect.   This fourth time the symptoms have not been as bad and the healthier liver seems to be combining with the medication to bring down the amount of virus in my system.  This is good news for protecting my liver as we wait for the arrival of hepatitis C specific anti-retroviral drugs such as telaprevir, which has largely completed its Phase III clinical trials and is awaiting approval by the FDA.   I am hoping that this new step will come through in 2010 or early 2011.

The only difficulty is that the drugs I am taking still have real side effects that slow me down.   The anti-rejection drugs raise my blood pressure and cause my hands sometimes to shake mildly (this has made a mess of my handwriting and check-signing ability).   The interferon lowers my white and red cell counts and robs me of energy at least one or two days a week.    I sometimes have to endure nausea in the evening and various strange tastes in my mouth.   There are occasional days when I  find it nearly impossible to get out of bed and I simply have to cancel whatever appointments or activities I had planned.

Still, I am surrounded by small, steady signs of improvement.   I no longer have to take the daily naps that came with liver cirrhosis.  The encephalopathy (or “brain fog”) is now largely gone.   I have started working out at the gym, with the guidance and encouragement of my own personal trainer, John Massie, who is home for a few months before he goes to Brazil for a program in sustainability and human ecology as part of his spring term abroad from Duke.   I am now driving again, something I had not let myself do for nearly six years.   And I made my first solo overnight trip in a few years, heading down to New York City for the fourth Institutional Investor Summit on Climate Risk at the United Nations, an event I first proposed back in the fall of 2002.

I am hopeful about the future.  If current trends continue, I should be much better in six months or so, at which point I will need to consider the amazing question of what to do with the next phase in my career.   My work has been on hold for a long block of time – except for a few small projects here and there – and it is both daunting and exciting to think about launching into a new field and a new job in my early fifties.   Given my eclectic background to date, there are many areas that appeal to me – from philanthropy to responsible investment work, from sustainability to shareholder activism, from teaching to service within the Episcopal church, and of course to various forms of politics.   One of the largest pieces of the challenge is to inform enough people that after so many years of sitting “on the bench,” as it were, I am now approaching the point where I will be able to suit up and head back on to the field.  Please spread the word.

Indeed, if anyone reading this has any particular thoughts about organizations or work through which I could be of service, I would welcome hearing from you.

The rest of the family is in good shape as we make it through the winter.  Anne continues to bear a heavy teaching load, since she taught all the way through the fall and into the intensive “winter session” at RISD, and then will have to keep going through May.   Kate is rehearsing simultaneously for two community theater shows.   Samuel officially completed his academic work at Yale in late December and is now working as an unpaid intern in a fascinating position with the U.S.-China High Level Economic Dialogue out of the Treasury Department in Washington D.C.   I am hoping that when the unpaid portion concludes he will be able to find something with a salary in the same city!   As I mentioned, John is preparing to go to Belem, a city of two million people at the mouth of the Amazon.   He has been diligently practicing Brazilian Portuguese through his computer and with anyone who speaks it (there are quite a few in Somerville).

We appreciate the continued support that we have received in many forms – through our Sunday community of St. James’s in Cambridge, through our many friends and neighbors who have stepped in to help, and through our real and honorary relatives spread out across the country who check in on my progress regularly.    2009 was a hugely eventful and challenging year for us, and we are hoping that 2010 will be period when we can settle into the more peaceful life of which we dreamed for so long.   We wish the same to all of you.