Just read this in Wall St Journal. Reproduced below from:
yale64.org/remembrances/lie...
since the WSJ version is in a paywall.
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His son calls the prior condition old fashioned MPD. I assume it was PV, suggests his Dr may have been likewise old fashioned and maybe he didn't get early IFN or Rux treatment.
Seems it was an aggressive MF that progressed to AML, but this is not explicit. The med that stopped working probably was Rux, we know it's limited against advanced MF. His age (80's) may have precluded an SCT.
"The same specialist treated him all that time, and my dad had never asked how long he had left." This is not an active patient, which is not good or bad, just one's entitled choice.
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Joe Lieberman Lived Life 110% to the End
He learned in 2018 that he had a serious disease. Even when he started feeling it, he kept working full tilt.
My dad, Joe Lieberman, died two weeks ago. He fell and hit his head on March 26 and left us the following evening. The past two weeks have been a blur to me, like one long day, and I feel flattened.
Like everyone else, we in his immediate family have experienced his loss as sudden. But for us, it was a little less sudden than it was to so many who have shared this time of grief. We had recently learned that my dad had been diagnosed more than six years ago with a form of bone-marrow cancer called myelofibrosis.
Two years before that, he’d been diagnosed with a more chronic but generally not terminal condition called a myeloproliferative disorder. This is what we thought he still had. He would go to the doctor every year, hear that his blood tests were still good, and carry on. A friend reassured me that the sickness my dad had was the kind of thing you died with, not from.
But in late February of this year, we clearly came to understand that in January 2018, when he was almost 76, his diagnosis had officially changed to myelofibrosis. His life expectancy with myelofibrosis was probably not more than five years. Still, he never mentioned anything like cancer or a shorter life expectancy. He continued to live with his characteristic energy and positivity, so our concerns remained mild.
Things didn’t change until his final six weeks. The medicine he had been taking to manage the disease stopped working, and he became . . . sick. Why do I pause? Because he was still as productive and optimistic as ever. In late February, at a dinner for his 82nd birthday, he said he was feeling “really bad.” My dad wasn’t one to admit that he felt even a little bad. His words were alarming but belied by his upbeat demeanor. He was coming off a marathon of travel: a family celebration in Israel, the annual security conference in Munich, a business trip to Washington. He felt sick but sounded happy and was working full tilt. He agreed that at least until he felt better, he would travel less.
He went to the doctor at the end of February, when it was clear the myelofibrosis was taking a heavy toll. He let me talk to his doctor and report back to our immediate family. The doctor shared some troubling numbers. When I asked for a prognosis, he told me he wouldn’t answer directly because my dad himself hadn’t asked for a prognosis. He did say that he had seen patients at this stage live as much as a few years. At the same time, the doctor warned that if something went wrong, things could happen fast.
It seems likely that my dad’s fall and death stemmed from his advanced myelofibrosis. How or why doesn’t really matter. The basic facts are that he was well cared for, and that he’s now gone.
I share all of this for two reasons. First, we in the family were fortunate to have a month or so to wrap our minds around the idea that he wouldn’t be around forever. We had been told that things could happen quickly, but none of us expected the end this soon. Nonetheless, we had a month to brace ourselves, and I’m grateful for that.
Second, it isn’t clear my dad ever knew his life expectancy during his final six years. The same specialist treated him all that time, and my dad had never asked how long he had left. Instead, he kept moving forward, optimistic and strong. Did he have the willpower not to Google his condition and gauge his prognosis? Quite possibly. In any event, he lived as he had always lived right to the end. He fell that night in the den, hit his head, regained consciousness, got a glass of water and Tylenol for what he described as a normal headache, sat back down with his love, Hadassah, and shortly thereafter slumped in his seat. If he had any pain, it lasted no longer than a couple of minutes. It has helped us to hold on to this information, and perhaps it will comfort others who cared about him as well.
Do I wish that we had understood his condition better and longer? In retrospect, not really. My dad wasn’t about death; he was about life — and living it. If I had to guess, he knew he had a serious illness and may not have wanted to know more than that. If he’d known his life expectancy in 2018 and shared it with us, to a significant extent these past six-plus years would have been counted down. He would have been counting them down, and we would have been counting them down. That’s not how my dad lived, and that’s not how he would have wanted people to see him. Consequently, he lived life at 110% until the end.
As was the case all through his blessed 82 years, he did it his way. There’s nothing about Joe Lieberman’s life to mourn except that it’s over.
MF , ET JAK2
Post ET MF - Advice Please
Spleen embolisation gone wrong
Is this a sign of progression from ET to MF?
