Today is January 17, 2019 -
I have some difficult news to share with you. I have a serious illness called
myelofibrosis. I was diagnosed with this disease—a rare, unpredictable form of blood
cancer—over three years ago. While I was by-and-large stable for all this time, the
disease has progressed in the last few weeks, and I find myself in a crisis situation.
Some background might help you understand where I am right now. About 28 years
ago, during a routine check-up, I was found to have essential thrombocythemia, an
uncommon, chronic blood condition characterized by the overproduction of platelets.
Most people with this condition live out their lives with it. I regularly saw a
hematologist who monitored the high platelet count. There was no treatment or
excessive cause for concern.
However, about four years ago, my platelets dropped into the normal range. While I
thought that must be a good thing, my doctor informed me otherwise. I was monitored
more closely and, as my platelet count continued to decrease, my local doctor
recommended I see a specialist in New York. A little over three years ago, I was given
the diagnosis of myelofibrosis, a disorder that disrupts the body’s normal production of
blood cells, resulting in extensive scarring in the bone marrow.
Over the next three years, I traveled to New York every week on my day off (yes, those
of you I saw on the train, I did go to museums and shows and to see friends but only
after a stop at Mt. Sinai Hospital) where I received a shot to boost my hemoglobin, and
once a month I saw one of the world-renowned specialists in this disease. My numbers
(platelets and hemoglobin), while abnormal, were stable, and I had virtually none of the
myriad possible side effects of the disease. While the long-term prognosis was not good,
the doctors were optimistic that I would continue to be stable well into the future. I
continued my regular routine and schedule: preaching, teaching, counseling and
performing all aspects of my job as I had for the previous four decades of my rabbinate.
I like to say I have been operating on “luck and pluck”—the disease was not
progressing, and I was determined to keep on as always.
Last month, though, things changed. My platelets fell to a dangerous level, and I was
reintroduced to the bone marrow transplant surgeon at Mt. Sinai, whom I had met
shortly after my diagnosis in 2015. With the unpredictability of the disease, checking for
potential stem cell donors is part of the hospital’s protocol, since a transplant, while
risky, is this fatal disease’s only cure. I did not have a match. Now we talked about a
newer procedure also proving successful: a bone marrow transplant using a half-
match—my son, Gabe.
For the past few weeks, I have undergone pre-transplant testing, still under a cloud of
uncertainty, since only a small percentage of those with myelofibrosis are considered
eligible for a transplant. Last week during my meeting with my doctors, I was told that
all of my preliminary test results were good; they feel I am otherwise healthy enough to
undergo the bone marrow transplant.
There are still additional hurdles prior to scheduling the transplant; however, with its
possibility becoming more of a reality and its timing potentially very soon, I wanted to
tell you about my disease and my prospective treatment. I have struggled these past
three years with keeping this news private, although that is exactly what my doctors
recommended, given my long-term stability, the unpredictability of myelofibrosis and
the emotional toll of coping with a devastating illness in public. I have just begun to
come to terms with the alternate reality that I am now facing.
I want to be clear that I have every intention of making it through the transplant, should
I be able to go forward with it, and after my recovery continuing as your rabbi until my
retirement next year. I am deeply committed to our synagogue, hoping—praying—to be
part of its bright future. I will work to ensure continuity by mentoring our new assistant
rabbi, Keven Friedman, and I have full faith that the synagogue’s leadership and the
congregation as a whole will meet the challenges of the coming year with resolve,
determination and good will.
As my medical plan develops, I will keep you informed. But most importantly, I ask for
your prayers at this very difficult time for me and for my family.