Yesterday, the wait to see Dr. Goldberg was long but the sky was clear. From Floor 14: Leukemia I watched planes land and take off at LaGuardia. I also saw a patient on a stretcher who reminded me of the gravity of why we were there.

Good news for me right now.

My new fibrosis score for BMB #3 is Grade 0, while BMB #2 was Grade 1. Grade 3 is the worst. So going back to zero is very welcomed, and apparently dependent on which area the biopsy sampled. Because my platelets are mildly elevated, Dr. Goldberg is going with the “good” MPN diagnosis of ET – essential thrombocytosis, also called essential thrombocythemia.

ET is something people can live with for decades with minimal treatment. The other two diagnoses that have been on my diagnosis table are much darker: The median post-diagnosis survival for Myelofibrosis (MF) is 4-5 years and chronic eosinophilic leukemia (CEL) is two years. ET can transform at anytime into MF or AML (acute myeloid leukemia, also very bad). So ET is not exactly a clean bill of health, but it’s not a death sentence. I’ll take it.

The bad news: The fusion testing that was supposed to be done again on BMB #3 did not happen. I guess because they already feel I don’t have the fusion from my blood tests. It started to dawn on me that was the main reason why I got BMB #3 and I felt angry and frustrated. That shit is pretty painful/hardcore to go through and I’m clearly going to need more of them in the future.

We were hungry and tired after finally escaping MSK and it was raining now. We got Lebanese and I asked Javi if he was happy for me. I wanted to celebrate and feel excited for the good news about my capacity to continue to exist on this mortal coil. But it wasn’t happening.

I may have to go on prednisone for some time before/while starting mepolizumab, as treatment for hypereosinophilic syndrome (HES). This seems to be a diagnosis I am getting, in addition to MPN/ET. My pulmonary function test shows worsening asthma/obstructive breathing disorder, interpreted as end-organ involvement stemming from the eosinophilia. I am not 100% sure I’m understanding cause-effect chicken vs egg stuff here, but it’s my best lay explanation. I’m also confused because HES diagnostic criteria seems to involve excluding MPNs. This feels very much above my paygrade.

I will seek a second opinion with Weill-Cornell Silver MPN Center once I feel MSK has wrapped up their testing, diagnoses, and treatment plan recommendation. But I have another appointment with MSK next Monday again to follow-up, once Dr. Goldberg discusses my treatment plan with his group. Waiting for that for now.

When I met him, my pulmonologist Dr. VanderEls said candidly, “looks like you’re just waiting for the other shoe to drop.” I hope that is not the way the rest of my life feels. I do need to work on some emotional adjustment within myself to make this work long-term.